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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What the ACA Means to Me

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*No kittens were harmed in the making of this post. Obviously.

“Oh nooooooo….she’s going to talk about politics!” While I can assure you that I am just as politically exhausted as the rest of you, I am going to broach the subject. Because in today’s world, it appears that we can’t afford not to. And healthcare legislation, being particularly critical to survival at this point in my life, is capturing my attention at the moment.

The Affordable Care Act (ACA, aka Obamacare) may not be perfect, but it has a solid foundation that has brought health coverage to millions of Americans. Building on that foundation and investing in strategic fixes versus a complete gutting would make the most sense in a sane world. But things haven’t been so sane lately, and a full repeal and replacement of the ACA is the most likely scenario ahead of us at the moment. With that in mind, I thought I’d share a little of my story and how the ACA has helped keep my family and me alive and healthy.

No more lifetime spending caps

Before the ACA was implemented, 59% of Americans with employer-based health plans had a lifetime cap, or limit, on their health insurance benefits. While caps varied, 16% of those insured Americans had a lifetime spending maximum of between $1 million and $2 million. Even those with a “generous” cap of $2 million or more could quickly find themselves in trouble if they were diagnosed with a chronic condition or experienced a catastrophic medical event, such as a serious car accident or a premature birth.

Last year I had $619,728 in healthcare expenses covered by Tim’s employer-based insurance. That’s a single year of staying alive, and a cost that will most likely just go up as treatment progresses. It doesn’t take a math genius (which is good, because I’m definitely not one) to figure out that if lifetime spending caps are reinstituted with a repeal/replacement of the ACA, I would quickly run out of financial runway to continue life saving treatments.

Getting insured for pre-existing conditions

When I was in my twenties, I had to pay out of pocket for antidepressants and related doctor’s visits. Like any 20-something kid, that era was punctuated by a number of upwardly mobile job changes, and insurance plan changes to match. And because my major depression was considered a pre-existing condition, new insurers wouldn’t pay for its treatment.

Fortunately I had good doctors who were also generous with their drug samples, but I remember having to make prescriptions stretch and occasionally going without. In 1996 the Healthcare Insurance Portability and Accountability Act (more commonly known as HIPPA) placed limits on insurers’ ability to implement a pre-existing conditions clause, and the ACA further removed these restrictions.

If pre-existing condition health insurance clauses were to become legal and widespread once again, my husband would be locked into his current job so that we could retain the same health insurance. In those circumstances, a job loss would be absolutely devastating.

Coverage until age 26

When I was a young woman, having the ability to gain some financial breathing room by remaining on my parent’s health insurance until age 26 would have been a huge help. The crushing student loan debt I was under in my early twenties was enough of a burden (but that’s another discussion). As a parent, I know that by providing our young adult children with health insurance, we’ve been able to help them successfully transition into the working world without making them choose between essentials like healthcare and food.

These are just a few of the reasons why I’m invested in making sure that our lawmakers don’t throw the baby out with the bath water when it comes to repealing and replacing the ACA. There are plenty more, and I’m sure you have your own “wish list” for whatever health insurance legislation we end up with (I’d love to hear your thoughts).

Which brings me to the impetus for this post. On April 1st, there will be a nationwide March for Health in D.C. and other locations across America. Spearheaded by the fabulous Christel Marchand Aprigliano over at The Perfect D and DPAC, the March for Health provides an outlet to make our voices heard so that any repeal/replace program for the ACA promotes “equitable and affordable access to quality healthcare for all.” This is a non-partisan event, and I would encourage anyone concerned with the future of our healthcare insurance system to get involved. You can sign up for updates over at the new March for Health website.