Navigating Pinktober

October is Breast Cancer Awareness Month, and the world is awash in pink. But all the pink products you see on the shelves this month? Some purchases have minimal to no benefit for breast cancer patients (and a few can actually harm us). Before you buy pink, it’s a good idea to do some research and find out what charity the product supports, what they do, and how much of the purchase proceeds actually go to the charitable organization. There are also other (and better) things you can do to support women with breast cancer year round.

Pinkwashing Can Cause Cancer
Some of those pink products contain carcinogenic chemicals or ingredients, or are produced using processes that have been linked to causing cancer. But corporations are smart – they throw pink on a potentially carcinogenic product – a practice known as “pinkwashing” – and rely on well-meaning consumers to purchase it to support someone like me. If you want to buy pink in support of breast cancer patients, please read this article from Breast Cancer Action that explains how to ensure your purchases are making a difference and not harming you.

Let’s Raise Awareness of the Breast Cancer that Kills
Aside from the pink politics of this disease, there are other reasons that October makes me cringe. First is the fact that the month is almost exclusively focused on breast cancer awareness and the importance of screening and early detection. I believe at this point, 32 years after the first National Breast Cancer Awareness Month, the majority of women are quite aware of the importance of mammograms and self-exams. At least some of the press and funding Pinktober generates is better focused on research towards improved treatment and a cure for the only breast cancer that kills – metastatic breast cancer (MBC, or stage IV).

Out of all the research dollars that fundraisers, private donations, and government grants generate year-round, only 5-7% goes towards finding a cure for MBC. So if you’ve ever asked yourself why we don’t we have a cure for breast cancer yet, this is surely a part of the reason why. Pretty in pink, treatable cancer patients are more consumer-friendly and more easily marketed than the face of the terminal, stage IV patient. Please understand that my intention is not to downplay the struggle non-metastatic patients face, for it is a difficult one both physically and emotionally. But far too many of these women don’t realize, through no fault of their own, that they have a high risk of developing MBC themselves one day.

Understand that Stage IV is a Threat to All Women
When I was diagnosed with stage 0 ductal carcinoma in situ (DCIS) in 2012, I was scared but I was told that with this early stage breast cancer, after I underwent a double mastectomy, I would never have to worry about breast cancer again. In fact, when Tim and I went for a second opinion at the renowned Dana-Farber cancer center in Boston to find out if radiation and/or tamoxifen were necessary treatments for me, the oncologist told us that I was already “cured” and we should go out and celebrate and not worry about a thing.

Wrong. Three years later a hard lump in my neck and severe back pain showed up, and I learned what most women don’t realize until it’s too late. Three in four women diagnosed with invasive, non-metastatic breast cancer will eventually have their cancer spread and develop stage IV metastatic breast cancer. And when you have MBC, you have a limited number of treatment options. Cancer, being the smart little f*cker it is, keeps changing to adapt to the chemotherapy and other anticancer treatments you take. So you cross your fingers and hope you live long enough for the FDA to approve more (and hopefully better) drugs to fight it. Which is when you realize that the lack of funding for MBC research is a bigger problem than you ever understood, and pink ribbons are not currently helping it.

The Future Isn’t That Rosy (But We Can Change That)
Finally, every time I see a pink ribbon it reminds me I am living on borrowed time. The median survival time of a woman my age living with stage IV is 38.7 months (3 years and change) from diagnosis, and the five-year survival rate is 36%. I was officially diagnosed through a lymph node biopsy in the fall of 2015, but given my symptoms throughout that summer, consider myself stage IV since June of that year. That means I’ll hit the three year mark with MBC this coming June. That said, I’m more than a statistic and there are women I know that have lived with stage IV for ten years or longer. They are my role models. I continue to do what I can to stay healthy and hope that I’m an outlier on the statistical path of stage IV breast cancer.

If you are still with me at the end of this post, thanks for hanging in there. I know it was a downer (here’s a cat meme for you to lighten things up). If you had been planning to buy pink this October, now you can do so with a little more knowledge behind the purchase. If you want to donate to a breast cancer organization instead of going pink, let me suggest Metavivor, one of the only non-profit currently focusing exclusively on funding stage IV research.

Top 10 Worst Pink Products
And now for some comic relief (and in some cases, a bit of righteous indignation), here are the top ten most ridiculous products I’ve seen that go pink in October this year. Have some of your own? Post them in comments.


Not an official BC awareness product, but I would buy it.

  1. The Oil Fracking Drill Bit. Classic pinkwashing – fracking has been linked to cancer.
  2. 5-Hour Energy Drink. When you need that 3:00pm energy boost before your mammogram.
  3. TCP Lightbulbs. Because breast cancer lights up my life.
  4. Pink Kiss Martinis. Actually, these may not be such a bad idea.
  5. Casket & Coffin Cremains Urn. When you look at your loved one’s urn, you really want to be reminded of the disease that killed them.
  6. The Calf House. Hat tip to a certain Facebook friend for making me aware of this monstrosity.
  7. Fisher Snowplows and Salt Spreaders. Plowing through to spread awareness?
  8. Citron Feminine Hygiene Disposal Boxes. Bloody hell, someone in the Citron marketing department is really reaching for a buck. Also – newsflash – many chemotherapies induce menopause.
  9. Natural Contours Vibrator. At least this is a useful product.
  10. Callahead Portapotty. All I can do is shake my head.




Steroid Stay Puft Paula

Just a brief post to let everyone know that my brain MRI showed NO new metastases and overall reduced swelling around the existing metastases. That’s good news on two counts. I see Dr. Chiang, neurosurgeon extraordinaire, on October 2nd and will find out more, but that’s the quick update from her nurse. I’m hoping they’ll let me stop taking these steroids so I will stop feeling (and looking) so puffy and hungry all the time.

As for the spot on my ovary that showed up on my recent CT scan, the gynecological oncologist I saw this week suspects it is just a run of the mill cyst (actually two cysts grown together). They will do another ultrasound in three months to ensure it hasn’t enlarged or shown signs of being cancer. I certainly don’t need my ovaries anymore if they need to come out; but with my complicated health picture they also don’t want to do any surgeries, especially with general anesthesia, unless absolutely necessary.

I said this would be brief so I’ll keep it that way. But I am going to ask a favor of all of you. The latest proposed healthcare legislation that Congress is considering to replace the Affordable Care Act, the Graham-Cassidy bill, has no real protections for the millions of Americans living with pre-existing conditions. The Senate is expected to vote on this on September 30th. Please educate yourself on the implications of repealing the ACA and replacing it with the Graham-Cassidy bill, then call your legislators and tell them what you think. Thanks for listening, learning, and acting.


Talking Points: Six Ways to Support a Friend with Stage IV Breast Cancer

I love my friends and family. Everyone has been extremely kind and supportive since my stage IV breast cancer diagnosis, and I can’t ask for much more than that. But I know from experience and from conversations with other metastatic breast cancer patients that sometimes the people that care about us find themselves at a loss for words, or on the other side of the spectrum, share unhelpful information. This isn’t done with any malice; it almost always stems from a lack of education on stage IV breast cancer.

With that in mind, I’ve compiled this short list of communication tips for people who have a person with stage IV breast cancer in their life. I hope you’ll find them helpful and will share them with others.

1) Say Something

When friends and family drop off the face of the earth following diagnosis it can often feel, well, devastating. Faraway friends might not think they can help, so stay silent. Others don’t know what to say and therefore don’t say anything. The problem with this approach is that it often leads to regret on both sides.

What to do instead: Reach out to your stage IV friend, even if it is outside your comfort zone. Use whatever communication method that works for you to start (and yes, a Facebook comment can be a valid way to show you care). I’ve had a number of people in my life contact me and preface their message with something along the lines of: “I’m sorry I haven’t contacted you before now but honestly I just didn’t know what to say or do. But you have made a difference in my life.” I love the honesty and the kindness in this approach, and no matter how long it’s been since we’ve talked, you are automatically forgiven for being at a loss for words.

2) Leave the Quackery to the Ducks

This is a particular pet peeve of mine since I’ve spent most of my adult life writing, researching, and producing educational materials in the health and wellness arena. Because of that fact, most of my friends and acquaintances are aware that I’d rather not hear about unproven cancer “cures” or treatments (e.g., alkaline diet, hemp oil, juicing). It’s also critical to remember that stage IV breast cancer currently has no cure – quack or otherwise.

What to do instead: Avoid the C (cure) word altogether with your stage IV friends or family. It’s always good to ask your friend if information or advice you have is wanted before offering it up, and to suppress any urge to be offended if the answer is no. If the answer is yes, make sure the treatment applies to stage IV breast cancer and has clinical research to back it up.

3) Don’t Play the Cancer Comparison Game

Please don’t tell a stage IV cancer patient that they should see the oncologist that ‘cured’ your Uncle Bill of prostate cancer or the naturopath that helped their neighbor get through breast cancer. Or that they will be fine because your co-worker had breast cancer and she is now cancer-free. First of all, every type of cancer is unique in presentation and treatment needs. And even among people with “similar” cancers (e.g., stage IV metastatic breast cancer), each cancer has its own unique pathology and characteristics (e.g., hormone receptor status, cell grade, and so on). So what worked for your relative/neighbor/co-worker/dog walker/barista will very likely not work for your friend or loved one. Secondly, imagine how it feels when someone implies that you’ve chosen your coach (or doctor) poorly for the last and most important fight of your life. Enough said.

What to do instead: Nothing, unless your friend asks you for your input on finding a healthcare provider. As for relaying “cancer success stories” of people you know, just don’t do it. There is no cure for stage IV breast cancer and frankly, it’s depressing to have our experiences held up in comparison to non-metastatic patients.

4) Keep the Cheerleading Practical

I understand the tendency to lean towards the overzealous when it comes to sending well wishes to a stage IV cancer patient. You want to avoid the elephant in the room and try to normalize things. So you say things like:

  • “You beat it once, you’ll beat it again.” (No, a non-metastatic cancer may have been ‘beaten’ once, but in the end, there is no beating stage IV cancer.)
  • “You’ll be done with chemo before you know it.” (We may be, but then we’ll be on a different kind of chemo…stage IV treatment is for life.)
  • “I believe in miracles. I know you will be fine.” (A nice thought, but it invalidates the patient’s struggles and reality.)

What to say instead: Most of us appreciate any expression of sending healing thoughts; prayers; and good mojo, juju, and/or vibes our way. In short, offer any well wishes that say “I’m thinking about you and I care.” I personally also have no objection to “Keep kicking ass” because cancer deserves an ass-kicking.

5) Refrain from “Little White Lies”

When people say “You look great!” when I clearly don’t, it’s a reminder of the loss of my former, cancer-free self. During my roughest chemo so far I was puffy-faced from steroids, 40 lbs heavier, and bald – not the look I was going for. Remember, we have cancer, not vision loss. That said, I know compliments are always given with the best of intentions, and they may be quite validating for women who are in a period of active control of this disease and are just bouncing back from feeling unattractive.

What to do instead: A good rule of thumb is to ask yourself if what you are saying is objectively true or if you are just trying to be kind. If you really feel a need to compliment a stage IV friend on appearances when they aren’t looking so great, pick an article of clothing or jewelry they’re wearing to admire instead. At the end of the day, I’d personally rather hear that I sound strong and determined then I look beautiful. Unless you are my husband. Then you are the sole person who must tell me I look gorgeous in the worst of times.

6) Don’t Fade Into the Woodwork. Stage IV is for Life

I have several good friends who make a point of traveling halfway across the state to take me out for lunch or coffee every month or two. Another friend has texted, emailed, or called me at least once a week (often every day during tough times) since I was diagnosed stage IV. Just that small gesture, which is often no more than a “How are you doing?” still brightens my day and my attitude even though we’re approaching two years post-diagnosis now. And from what I understand from other stage IV friends, it’s also highly unusual; people often start quietly pulling back from contact after the first year of treatment, assuming that since their friend is still alive they’ll be okay and support isn’t needed. It is.

What to do instead: We all have busy lives and our own crises to manage. And I truly don’t expect, or want, everyone I know to start contacting me every day (if you know me well, you’ll know I won’t pick up a ringing phone unless it’s urgent). But the occasional greeting card, email, text, Facebook message, blog comment, or other communication is so much appreciated and really does touch my heart and remind me that I have a community of caring people behind me. My husband teases me about my eagerness to get to the mailbox every day, but this is part of the reason why (it certainly isn’t to get the medical bills).

P.S. – And now a note for those following along for health updates. My CT and bone scans from last week largely showed no progression in my cancer (huzzah!). I will need to follow up with my gynecologist as they did find a cyst on my left ovary that needs further analysis, but that is likely no cause for concern. Next scan will be my brain MRI in about two weeks.

A Badass Badlands Adventure

We’ve finished our blitzkrieg of summer bucket list adventures. Last week was South Dakota, where we attended the 77th Sturgis motorcycle rally, visited Mount Rushmore and the Crazy Horse monument, drove through the Badlands and the Black Hills, reveled in the tackiness of Wall Drug, and hung out in Deadwood. Here’s a few of our travels in pictures for those who are interested.

I made it through the trip feeling pretty good, with only minor leg/foot swelling flare up, mostly due to flights and the altitude in some locations. Taking it slow and steady, with breaks in walking, helped manage my energy levels and kept us going throughout the day.

Poor Tim was kind enough to put up with my 6:00 am wake up calls to accompany me to breakfast at the hotel (darn steroids are still keeping me ravenous and sleep deprived). Speaking of, we would highly recommend the Deadwood Lodge to anyone traveling out that way; it’s a gorgeous facility located within a breathtaking landscape, and they were so thoughtful and accommodating. They didn’t penalize us for arriving late (our first flight out was canceled the morning of our planned departure, so we were a day late getting there) and gave us a lovely gift basket upon arrival. Plus they had a herd of mountain goats that kept hanging out and grazing below our hotel room window, so what more could you ask for?

Due to our hectic summer schedule, I went in for my infusion treatment this Monday, a week later than usual. I’ll be getting my regularly scheduled full body CT and bone scans within the next two weeks per doctor’s orders. My latest brain MRI is set up for September 12. Of course we will keep everyone posted on the results. I have not had a full blown seizure since March, although last month I had two instances of prodromal symptoms of a seizure (i.e., signs a seizure is imminent – in my case, a visual aura). I took the nasal spray my neurologist gave me to abort seizures in both cases, and it seemed to work. What all that means in regards to progression of my disease I do not know, but we’ll see what the scans have to say when we get them.

Although it’s outside of the usual context of this blog, I need to say that my heart hurts for what happened in Charlottesville this past week, and the growing chasm between what this country stands for and where its leadership is taking us. I hope we will all keep doing the right things and speaking out for those who have been silenced and/or marginalized. Things can only get better, right? Because I have it on my bucket list.



Weddings and Wide Open Spaces

We made it to Washington and Arizona without a visit to the doctor or hospital. I only fell once (I blame the heels that I haven’t worn in months) and I walked more than I have in at least a year. All in all, it was a very successful vacation.

The trip started with a flight to Washington to see my beautiful niece Katie and her now-husband Freddie tie the knot. It was a lovely ceremony and celebration, and it really felt like my Dad (Katie’s grandpa) was there watching over all and blessing this special couple. We had to miss my Dad’s memorial celebration due to my health earlier this year, so it was so nice to catch up and to spend some time with Nora, my stepmom, and the rest of the family.


Presenting Mr. & Mrs. Wilhelm

The Arizona leg of our trip started at the Phoenix airport and wound its way up to Sedona and Jerome (a small former copper mining town turned arts and tourist destination tucked up into the mountains) before hitting the Grand Canyon and nearby sites like Meteor Crater. We stayed in Flagstaff (home of Aunt Edna) to be in driving distance of all the spots we wanted to visit. It was the first time in Arizona for both of us and we were in awe of the gorgeous scenery, the animals, and the fancy Mercedes the rental car place upgraded us to (which we still hadn’t figured out all the bells and whistles to at the end of the trip).


At the South Rim of the Grand Canyon.

If you’d like to see the rest of the trip pictures you can visit the album at Shutterfly. We are leaving for the Black Hills of South Dakota (and the Sturgis motorcycle rally) later this week to make our final bucket list trip of the summer. We will share those adventures in the next post.

My next brain MRI is in early September. I’m also due for my regular four month CT and bone scans towards the end of this month. Aside from being tired and hungry (which is directly related to the steroids I’m on to manage the swelling in my brain), I am feeling pretty good. The worse part of steroids is that you have a perpetual gigantic appetite, which translates to a creeping weight gain over time, and they tend to feed insomnia as well. You never think cancer will make you gain weight (until you have it, that is). But this too shall pass.

Until next time,

Paula & Tim

Tattoos and Chemo Calls

Good news folks! My lumbar puncture came back negative for signs of leptomeningeal metastases. While it’s not a completely full-proof test for LM (my neuro-oncologist pegged it at about 80% accurate, some research indicates it’s more like 55%), it is the best tool they have right now. This result is a good thing; LM occurs when cancer spreads to one or more layers of the blood brain barrier and/or into the cerebral spinal fluid. It’s difficult to treat with a tough prognosis, so we are relieved to have it off the table right now.

More Chemo Changes

We’ve also made another chemo change, or change back, as it were. The oral Tykerb/Xeloda combination I’ve tried the past month has just been too much for my body to handle. I will spare you the gruesome details, but even with extra meds to handle the side effects, I wasn’t spending much time upright or feeling human. Plus taking 80+ pills a week turned out to be too much for my stomach to even humor me about. So tomorrow I will settle back into the chemo chair and go back to my Herceptin and Perjeta infusions. I’m looking forward to a jump in quality of life and weaning off some of these steroids and other side-effect management drugs.

The Bucket List: Sunshine and Sister Tattoos

On Saturday, Cas and I went and got matching ankle tattoos. It was my first tattoo (his….fifth I think?) and a very special item on my bucket list. We chose a sunshine motif as Cas has always been the sunshine that keeps me happy when skies are gray (sorry in advance for embarrassing you, kiddo). Thanks to Bryan at Lucky’s in Northampton, MA for doing a bang up job.

sunshinetattooMy sister, Marlo, just left yesterday after a week’s visit here to Connecticut. It was so wonderful to see her and reconnect. She lives in Texas so we don’t get to visit nearly enough. To commemorate the trip, we also got matching “Soul Sister” tattoos (because two bucket list tattoos are better than one!). Manny at Nautilus Tattoo here in CT did awesome work and we love them.

sistattooBefore I leave the subject of tattoos, I have to shout out to Lynn Prowitt that commas are next on the agenda. And it doesn’t hurt much at all…I promise.

Grand Canyon and Family Fun

We are headed to Seattle later this month to see my niece, Katie, get married to her fiancé Freddie, which I’m sure will be a beautiful event. After a few days in Seattle to have a much needed catch-up with Ford family, we are headed down to Arizona to visit the Grand Canyon, another bucket list item. Keep us in your thoughts and prayers so we can make this trip go down successfully without an accompanying ER visit.

Chi-Town Adventures

My bucket list 2017 Chicago trip is complete! While we had to make some last minute adjustments to accommodate an afternoon in the ER, it was a wonderful vacation filled with friends, family, food, music, and love.

Your Obedient Servant, A. Ham

We flew in Thursday morning and were fortunate enough to stay at the Palmer House, which is just half a block from the Private Bank Theater where Hamilton is currently playing in Chicago. Thursday was a sightsee (from the car) and settle in day (the theme of this trip was slow and steady wins the race).

IMG_5904Tim spent Friday channeling his inner Ferris at the Art Institute of Chicago, just a block away, while I caught some much needed rest before the show. Hamilton was just incredible. We had fourth row seats and the cast, music, and staging was amazing. As the song says, it blew us all away.

Despite my slowed pace, we did plenty of touring in the car through the city, catching some iconic museum and park views and enjoying the gorgeous weather. We learned on our arrival that it happened to be Pride Fest in Chicago that weekend, and we would have also enjoyed taking in the parade and the special celebration at Navy Pier. But my body wasn’t quite up to the physical demands of that much walking, so we sat it out this time.

My AH Crew

We spent Saturday in Arlington Heights so I could see (and show off) my hometown. We probably could have spent another full day there exploring, as things have changed so much. Of course we made a critical stop at Portillo’s for an authentic Chicago hot dog (so much better than the East Coast version – sorry NY system lovers). And deep dish Lou Malnati’s pizza was also consumed before heading back East. Chicago food goals=complete.

Arlington Heights friends

Wonderful friends from my youth (Back row, left to right – Jen, Amy, Mandy, Elizabeth, Me, Paul/Punky, and Jane; Front row, left to write – Susan, Mary, Michelle, and Phyllis).

On Sunday, my dear friend Susan and my mom threw a party in my honor with a bunch of my childhood friends out at my mom’s house in Huntley. The day was absolutely my favorite part of the trip (with apologies to A. Ham). I saw many special friends from grade school and high school, and it was so much fun to catch up on everyone’s lives and look through the old pictures that they were kind enough to bring along. I’m so grateful that they travelled to see me and that Tim got the chance to meet these special people in my life.

Family also stopped by and I had the chance to see my Uncle Ray, his partner Mary, my cousin Morgan, and my Aunt Sandy and Uncle Marvin (who were fresh from their 50th wedding anniversary celebration in Iowa). I don’t get to see these folks very often (and for Tim, it was a first), so it was an added treat.

Home Again

We canceled the Milwaukee leg of our trip in favor of spending Monday afternoon in the Huntley ER. Although I missed meeting up with a few good friends, it turned out to be a good decision; I needed the fluids and electrolyte boost to get back home safely and comfortably. We returned to Connecticut late Tuesday night, woke up early for scheduled bloodwork on Wednesday, and then hit Yale late Friday morning for the lumbar puncture procedure (to check my spinal fluid for signs of leptomeningeal metastases). That went smoothly and I’m awaiting results, but due to the holiday weekend we may not hear anything until Wednesday, 7/5. I’ll keep everyone posted on the results and plan of action.

What’s Next?

My lovely sister Marlo is coming to visit this week (yay)! We may or may not get a bucket list item off the list (read: tattoos) if my oncologist doesn’t have any objections and my chemo-related side effects decide to settle down a bit. My white cell counts are good so I’m hoping it’s a go from that perspective. Cas and I also have a matching tattoo date coming up. Jasper will of course remain ink-free for now, and he is having a blast visiting his best friend Nick for a good chunk of the summer.

Hot Mess, The Heartbreakers, and Hamilton Bound

It’s been a hell of a couple of weeks, both physically and emotionally. I started my new oral chemo, Xeloda and Tykerb, on June 5 and it is officially kicking my ass. The nausea and vomiting that has been dogging me since early this year has amped up as an expected side effect of these new drugs, as has the need to spend way too much time in the bathroom. Plus a new one – lip blisters! In short, I’m a hot mess.

Dr. K has reduced the dose of Xeloda to try and combat some of this, plus added some more symptom relief meds. We’ll see how that works and if we need to tweak the formula a bit more. We are headed out of town tomorrow for a much anticipated trip to Chicago, so it would be great if my body started to cooperate.

Thanks to the generosity of a family member (who shall remain nameless as they value their privacy, but who we appreciate and love so much!), we told Cigna to go fly a kite and paid for my denied brain MRI out of pocket. The results were mixed; there were no brand new metastases detected, but the scan did show that many spots previously treated with gamma knife are growing larger again, much like the spot I had laser ablated in March. This growth is likely due to radiation necrosis, but can cause swelling and other cerebral havoc depending on location and size.

Because of my symptoms and the location of one of these much enlarged spots near the blood brain barrier, Dr. Chiang referred me to Dr. Becker, a neuro-oncologist at Yale, to talk about the possibility of leptomeningeal metastases (LM). We met with him Monday and liked him a lot – he seems very methodical, knowledgeable, and empathetic – a good addition to the “brain trust” we already have on the case. Once we return from our trip, I will be going in for a lumbar puncture (spinal tap) to check my CNS fluid for signs of cancer cells. If I do have LM, there are a couple of different drug treatment options that the team will have to discuss, but we will cross that bridge if we come to it. Mentally, we are putting that whole scenario on hold until we get back from our trip.

There were a few bright spots this week. On Wednesday evening, we went to Hartford to see Joe Walsh plus Tom Petty & The Heartbreakers, thanks to a wish grant from “Do it for the Love” – an awesome charity that sets up live concert experiences for people dealing with a terminal illness. We had front row seats with a stellar view and were happy to have the company of Cas & Spencer at what turned out to be an incredible concert. I won’t bore non-fans with endless video clips but you can check out my Instagram or Tim’s Facebook if you’d like to have a listen.

Do it for the love

Before the concert, with a photobombing security guy. Thank you Do It For the Love Foundation!


Now, it’s on to Chicago & Milwaukee to visit family and friends and see Hamilton (squeeeeeee!). Can’t wait to see some old friends and show Tim around my home state. Please keep us in your thoughts and prayers for a safe and healthy trip.

Chemo Changes


Cigna has now denied the second request and appeal from my neurosurgeon for a brain MRI to assess for new growth given my daily nausea. That means we won’t be getting a look inside my noggin until early July, the three month post-surgical mark, when they say they will cover it. I could open a patient appeal with Cigna, and/or go to the state board that regulates health insurers and file a complaint, but by the time I spend the mental and physical energy on that and it winds its way through institutional bureaucracy, it will most definitely be well past July and a moot point. I’m saving my sanity and strength, and accepting their decision for now. Life is literally too short.

But we aren’t ignoring the problem. My oncologist Dr. K has suggested a change in chemo to attack any cancer growth in the brain in a non-surgical manner. As I’ve mentioned in the past, most chemotherapies and immunotherapies aren’t helpful in treating cancer spread to the brain because they do not cross the blood brain barrier, the protective three-part layer that surrounds the brain. But some clinical studies have found that the drug combination of Xeloda and Tykerb, two oral chemotherapies, is able to cross that barrier and shrink brain metastases in some women with my type of cancer (HER2+). So I will be making the change as soon as the new drugs arrive from the specialty pharmacy.

I’m a little nervous about saying goodbye to Herceptin and Perjeta, since they’ve worked so well from the neck down for 18 months. But over the past 14 months we’ve treated 25 brain metastases with gamma knife and one of those again with laser ablation, so it feels like this change in strategy is smart. If Xeloda and Tykerb can work some magic up there, at least for a little while, we’ll be in good shape.

ronaldMCDandmeThere are a few cons to the treatment switch. First of all, it isn’t as gentle on the system as my current immunotherapy. I may experience some hair thinning or loss again (just when I was creeping past the Ronald McDonald phase of hair regrowth…sigh). And there’s the usual long laundry list of possible side effects that most chemos have – gastrointestinal chaos, hand/foot syndrome, white cell depletion, etc. But there are medications to combat those side effects and it’s worth it if it works to stop cancer in my brain. It will also be nice to be able to take treatment in pill form instead of getting infusions every three weeks.

Whole brain radiation remains another option for me if my July MRI shows new metastases. But for reasons I’ve talked about previously, I’d like to save that as a last resort.

I’ll keep everyone posted on how the new routine goes. We are getting really excited to go on our trip to Chicago next month – the first in several summer bucket list adventures – so I’m hoping it’s a smooth road!

Much Ado About Pretty Much Nothing



Shirt cred to my sister, Marlo.

It’s a beautiful 78 degree day here in Old Saybrook, which is doing more to improve my mood than just about anything could. Plus I’ve made it through the first half of May without a trip to the hospital (woot!). I’m realizing that it’s been over three weeks since my last update; I’ll try to do better to keep everyone in the loop so you don’t have to email/message/call/send smoke signals to ask what’s up.

More Head Games

After some back and forth with insurance, my neurosurgeon’s office is resubmitting the request for my previously-denied brain MRI. It’s scheduled for May 22nd, assuming it is approved by Cigna. Cigna did respond to my Twitter rant about the first refusal and offered a peer-to-peer physician review of my case with Dr. Chiang, so given that and the fact that I’ve had non-stop nausea for the past couple of weeks (a sign there may still be something going on up there in my noggin), we are fairly confident it will be approved this time.

Yesterday I saw a new neurologist at Yale who specializes in seizures and epilepsy. His role on my treatment team is to manage the medications that control my seizures. He’s keeping me on the same dosage of Keppra, the medication that I’ve been on since my first seizure back in February. He’s also prescribed a nasal spray that is supposed to help stop a seizure in progress if I take it in the early stages. I haven’t had a seizure since mid-March at this point, so the Keppra seems to be doing its job. I won’t be able to drive my car again until three months have passed since my last seizure, which puts us at mid-June. I’m counting the days (and hoping that the seizures are permanently behind us!).

And Life Goes On

For those who asked, Jasper did make it to prom and had a blast. While we didn’t have enough time to get a tux lined up, his stepdad took him out the night before the big event and bought him a suit (and even talked the manager into some on the spot alterations).

Mother’s DIMG_5818ay was lovely and I got the chance to see all the kids. I received many lovely cards and presents, including an incredible painting of Ollie, our blind Siamese cat, by resident artist Jasper (see photo). Also not pictured, but very much appreciated, was a two-person kayak with all the accessories (thanks Tim!). After some lessons from the kids, I can explore our Old Saybrook waterways via kayak, and knock that off my bucket list.

Next month is another bucket list adventure – our trip to Chicago to see Hamilton and to visit old stomping grounds. We will also be traveling up to the Milwaukee area for a stop at the Harley Davidson plant and museum, and a side trip to my alma mater, Marquette University. Tim has never really been to the Midwest aside from making connections at O’Hare, so it will be fun to give him the grand tour.

We’ll also be going to the Grand Canyon and Sturgis this summer, thanks to the generosity of friends, family, and kind strangers who donated to my bucket list fund in memory of my late father, Paul Ford. Tim and I have been overwhelmed by the support and kindness of so many. We will be sure to share details of our adventures here.

I also promise to post again with the results of my next brain MRI, or with a rant about my health insurance if by some chance it is denied a second time. Fingers crossed it continues to show good post-treatment progress and no new metastases.