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.

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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).

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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.

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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

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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

 

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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.

It’s Showtime, Folks

Today is brain surgery day and I’m up at 4am wondering what I’ve forgotten to do in preparation of being out of commission for a few days. I’ll admit I have some minor nerves and some major thirst and hunger this morning (dang pre-op fasting). I suppose it’s inappropriate to be looking forward to a long, anesthesia induced sleep (but I am).

Since I’ve been forgetting virtually everything the past month or so after being introduced to the world of seizures (and antiseizure medication), I of course also forgot that I had planned on showing Tim the WordPress ropes before today so he could update everyone on the surgery with a blog post. So I’ll do my best to manage a post-op update from my phone app tomorrow, but can’t promise anything. Maybe I can find an ICU nurse that blogs.

I’m repeating myself but I can’t say enough about the amazing outpouring of support from everyone and our appreciation for the generous donations to my Dad’s memorial/PFM bucket list fund. So far we have raised $11,000; we thank our good friend Lynn for being our biggest cheerleader and helping to generate a huge boost in donations this past week. And the messages of encouragement from everyone who has reached out continue to keep us going. You guys all rock and we love you.

Much love, Paula and Tim.

Brain Salad Surgery

Hi friends. We have a surgical date for my brain biopsy and ablation – Wednesday March 22nd.

We met with Dr. Chiang again yesterday to walk through the details of the procedure. I’ll arrive at the unpleasant hour of 6:30am to get prepped for surgery. After I’m anesthetized, they will drill a small hole (about the diameter of a pencil) into the back of my skull where the laser device – called the NeuroBlate – will be inserted. Which means I’ll lose a little patch of my new crop of hard earned hair, but I’m over that already.

keepcalmDr. Chiang’s team will be taking MRI images throughout the procedure to guide the device into the right area of my brain. After they take a biopsy, or tissue sample, of the problem area, Dr. Chiang will use the laser to heat up and ablate the tissue. This will kill any cancer cells that are present and can also help “calm down” the swelling that is the result of either cancer regrowth or radiation necrosis (which of these two are present in the tissue will be revealed with the biopsy). The pathology results on the biopsy will also help guide Dr. Chiang in how aggressive she needs to be with the treatment area. If cancer cells are found she will “burn” a wider area; if the tissue appears to just be radiation necrosis she will treat it more conservatively. This is a little different then what I explained in my last post, as I originally thought the ablation would only take place with a biopsy that is positive for cancer regrowth.

The procedure will take about eight hours to complete. The hole is then closed with one or two tiny stitches, and afterwards I’ll spend the night in the ICU. If all goes according to plan they will move me to the regular neurology floor the following day. I shouldn’t be in the hospital more than 2 or 3 days, tops.

So now it’s essentially a lot of waiting until the big day. I’m hoping I don’t get any big eleventh hour surprises from the insurance company, as they decided not to cover the MRI I was supposed to have this past Friday. Fortunately, the last MRI I had in the hospital is recent enough for the neurosurgeon to use for planning purposes (and new MRIs will be taken throughout the procedure itself). I do know that our insurance company has requested more details on my case from Dr. Chiang before they will approve coverage for the ablation, so I’m now doing the “let’s check the insurance website every couple of hours for a new EOB statement” dance. Yale has been very proactive in jumping through insurance hoops in the past so fingers crossed we won’t have any hiccups.

A Difficult Week

Let me preface this post by saying I’m on some new medications that have me in space cadet mode, but I will try and be as coherent as possible.

On Monday afternoon I heard from my stepsister Debbie that my Dad had passed away in his sleep. He had atrial fibrillation, and his heart stopped in the middle of the night. It was a shock to us all, as it seemed his doctors had recently gotten the problem under control.

Within an hour or two after getting the news, I started to feel dizzy and get zig-zag spots in front of my eyes. The spots have historically been typical of a migraine aura for me, so I assumed that the stress of the situation had triggered one. Then things devolved – I started to get confused and not remember or recognize things – so Tim put me in the car and headed to the emergency room (fortunately he had come home from work when I called him with the news about Dad). On the way there, I had a seizure. Tim pulled over and called 9-1-1 and an ambulance came and transported me to the local Shoreline hospital (Middlesex), where I had a second seizure.

Because of the neurological nature of the problem, after some tests and scans, Middlesex had me transported to Yale for admission (where my neurosurgeon and radiation oncologist are based). I spent a couple of days there and was released on Wednesday evening. They found that one of my brain metastases had grown from 6 to 8 mm since my previous MRI on January 13th, and had some swelling and bleeding around it. I am now on steroids and antiseizure medications to help control it.

I have a follow up consult with the neurosurgeon on February 27th, and we’ll see where we go from there. In the meantime, I’m waiting to hear from my neurosurgeon as to whether or not air travel is safe so I can try and make it to Seattle for the Open House they are having to celebrate my dad’s life.

I don’t remember much from the past few days, but the outpouring of support from friends and family has been tremendous and greatly appreciated. My dad was a gentle, kind, and loving man who will be missed greatly. For those of you that knew him and would like to pay tribute, my stepmom, Nora, has asked that in lieu of flowers and in accordance with dad’s wishes, donations be made to either the breast cancer charity Metavivor.org or to my bucket list fund. We’ve set up an account at YouCaring to make donations easier if you choose the latter.

Please keep our family in your prayers as we deal with the loss of this great man.

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