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

denied-1936877_640

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

 

IMG_5830

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.

Out of Gas…And Patience

My tank has been empty lately. I’ve had little energy or enthusiasm for writing, cleaning, dog walking, or even getting out to a movie. I’m not sure if this is post-op fatigue that is normal for a month after neuroablation, or if it’s related to the stomach bug I had (that may still be lingering), or if I’m just worn out from all this cancer bullshit.

Photo on 4-25-17 at 9.41 AM #2Whatever it is, I’d like to get myself out of this funk. So I brought the Macbook along to oncology today to force myself to write and I’m currently sitting in the chemo chair, getting my Herceptin and Perjeta infusions. My oncologist, Dr. K., is on vacation so we met with the oncology nurse today. She’s concerned about my white blood cell counts being a little low, so I’ll be back next week for more bloodwork to check on things and to get my Xgeva shot (a medication I receive every few months that keeps my bones strong).

I also had a CT scan of chest, abdomen, and pelvis last week, and a bone scan. All showed no progression of existing metastases and no new involvement, which is great. Three cheers for Herceptin and Perjeta getting me to another four month scan milestone with minimal side effects (mostly fatigue…but that’s what naps are for). From the neck down I seem to be doing really well.

But how am I doing from the neck up, you ask? Well, I was supposed to have another post-op brain MRI at Yale this Thursday to check my progress, but my health insurer (Cigna) has denied coverage. Cigna says I have to wait three months until they will cover another MRI of my brain, even though my neurosurgeon Dr. Chiang appealed the decision with her clinical rationale. So I did what people do these days to get their customerservicecustomer service needs met – I bitched about it on Twitter. Cigna’s social media manager emailed me within 5 minutes of the tweet and asked me to send them further details so they could “look into it.” We’ll see what becomes of it. It would be nice if the insurance companies would honor my own doctor’s recommendation over some random benefits management M.D. who has only a surface level understanding of my individual case or needs.

In completely unrelated and much happier news, Jasper came home from school yesterday and told us he’s been asked to go to junior prom with a classmate. Unfortunately, prom is this Friday and he doesn’t own a suit or sport jacket, much less a tux. But that’s a dilemma that’s fun to fix (although you should ask me how much fun I’m having when it’s Thursday night and we’re still running all over Connecticut looking for formalwear).

Weekend at Brigham’s

We had a surprise overnight stay in Boston last weekend. On Saturday, we drove Jasper to Logan airport for a spring break trip to Arizona to visit a friend. After that, we took Chris to dinner for his birthday at a spot near Fenway. The plan was to head home to Old Saybrook after that, but it turned out my body had other ideas.

Near the end of our meal, I started feeling quite sick. I was going to head to the car to lay down but realized I wasn’t going to make it that far. I put my head down on the table to try and collect myself, and next thing I knew, I was waking up with Tim holding me. Much to my chagrin, I then proceeded to throw up all over his dinner plate (we left the waitress a very large tip).

To try and make a long story short, we thought that I may have experienced another seizure. An ambulance came and the EMTs wanted me to get checked out given my recent neurosurgery, so they took me to the emergency department at Boston’s Brigham & Women’s hospital. But when blood tests were run and my mental status remained pretty much unchanged (i.e. no memory loss, confusion, or balance issues like I usually have during and following a seizure), the consensus was that I fainted because of dehydration and low blood pressure.

benegativecatThe dehydration was likely due to the fact that I’ve had bathroom issues, nausea, and overall blechiness since last Monday. When you are stage IV, every ache, pain, and other discomfort immediately makes you think that a) the cancer is spreading or otherwise flaring up, and/or b) you are having side effects from treatment. This time it may have been the result of a garden-variety stomach bug, or what my friends with diabetes like to call being “real people sick” (i.e., sickness not related to their chronic illness).

At any rate, the doctors wanted to keep me overnight for testing and observation, so I was moved to a single room with a recliner for Tim on their observation floor. They ran a slew of lab tests, a CT scan on my brain (just in case), and a cardiac stress test. One of the potential side effects of Herceptin and Perjeta, my immunotherapy treatments, is that they can cause heart damage, so they wanted to be sure that I hadn’t fainted due to an emerging heart issue. While some of my blood tests were a little off due to the dehydration, I passed the stress test without a problem. A few bags of fluid, some supplements, and lots of Zofran later, and Tim and I were finally on our way home late Sunday afternoon.

Props to the capable and compassionate staff at Brigham and Women’s, who made sure we were both taken care of and comfortable. And the floor was blissfully quiet, such a rarity in hospitals but so important as it let me actually sleep the night I was there. I will definitely be giving them some love when the patient satisfaction survey comes in the mail.

And even bigger props to Tim and Chris for helping this poor old lady out. Tim, I couldn’t get through this without you, and I’ll try to get us through the rest of the spring without you spending another night in a hospital recliner. And Chris, we owe you a proper birthday dinner.

Coming up next week, I have a bone scan, CT scan of my body, and an echocardiogram (to follow up on the fainting incident). I’ll keep everyone posted on my progress. My motivation to write has been low lately, mainly due to the way I’ve been feeling, so I’d really like to shake this bug soon.

Finding My Words Again

One of my biggest fears has always been the possibility of losing the power to express myself with words. As a writer and editor (on long term hiatus at the moment), I’ve relied on my communication skills to support myself for two-thirds of my life. When I was diagnosed with brain metastases in 2016, that fear hit home hard. And when my first brain seizure struck last month, I quickly realized that getting this neurosurgery done successfully was important not just to my health, but to my sanity and quality of life.

harryheadwound

Head Wound Harry

Right now I am five days post-op from laser ablation of an area in the left occipital lobe (also known as the visual processing center of the brain). So far, the worst of the side effects from the surgery are some occasional short-term memory loss, slight vision and balance changes, headaches, and an overall mental slow down. Not that I was Einstein previously, but it probably shouldn’t be taking me 20 minutes to compose a five-line text on my phone. I’m hoping to have this blog post finished by next month. Kidding…maybe.

I am currently taking steroids and Lasix to reduce the swelling in my brain, along with my anti-seizure medication and a variety of other meds to manage other symptoms. The steroids are rough on sleep but a necessary evil. By the time I have my follow up appointments to get my incision staples removed and check my progress in about two weeks, the swelling should be gone and we should have a better grasp on whether or not I have any lingering cognitive issues. I can feel my mind clearing a bit more each day since the surgery, so I’m taking that as a sign that things are going to keep improving.

The initial pathology on the biopsy Dr. Chiang took in the operating room during the ablation procedure only showed radiation necrosis (or tissue death due to the previous radiation/gamma knife treatment). That means they don’t think there is any active tumor regrowth in the treated area, just radiation damage. I didn’t mean to bury the lede, as that’s certainly terrific news. But I haven’t yet received the final pathology results on the entire biopsy area; we’ll have a more definitive answer on that when I go in for my follow up. I also have another brain MRI scheduled for April 5th. We’ll certainly update everyone once we get all the information in hand.

I’ll share some thoughts on my overall hospital experience in a future post, but let’s just say while the vast majority of the healthcare providers I dealt with during our visit were wonderful (especially my fabulous neurosurgeon Dr. Chiang), they couldn’t help overcome some of the facility constrains that affected my stay. That included an 8 hour layover in two different recovery areas due to a bed shortage in the neurology ICU, discharge confusion, and hospital room noise levels that went to 11…and then some. More on all that to follow when the fog clears and the words start flooding back. I haven’t found my groove yet, but I will.

 

 

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.

Free Tickets to the Laser Light Show

We had our follow up with Dr. Chiang, the neurosurgeon, today to discuss next steps for my treatment given my recent seizures and the apparent growth of one of the previously treated metastatic spots in my brain.

Actually, whether or not the spot in question has an active tumor in it remains to be seen. The inflammation and bleeding surrounding it could be due to radiation necrosis from my previous gamma knife procedure (that’s when radiation kills a margin of healthy brain tissue). Or it could be brand new metastatic tumor growth. The only way to tell for sure is to go in and get a biopsy of the tissue in question; if the pathology shows that the cancer is active it then can be treated with laser ablation immediately following the biopsy. Laser ablation is essentially “cooking” the cancerous tissue with laser heat through a thin probe inserted into the skull. Ablation would be the treatment option of choice because once a spot has been treated with targeted radiation (e.g., Gamma Knife) as this one has, it does not respond well to further targeted radiation. Fortunately Dr. Chiang is an expert in the laser procedure as well as gamma knife, so we feel quite lucky to be in her hands with this new development.

The other option we considered was to take the “wait and see” approach and see what a new MRI reveals in a few more months. However, our attitude towards my treatment has always been to be as aggressive as safely possible to extend my quality and quantity of life as much as we can. Given how well my systemic treatment (Herceptin and Perjeta) is working on the rest of my body, we don’t want things to go downhill on the mental front because we waited around to deal with a tumor versus getting immediate answers. We have several bucket list trips planned for later this year (more on those as they get closer) and we’d like to get on top of this issue so that we are chasing the cancer and it isn’t chasing us.

I have an MRI this Friday evening to get the latest and greatest picture of the spot in question, then another follow up with Dr. Chiang on Monday morning (3/6) to go over the results and plan the biopsy and potential laser ablation. It is a minimally invasive procedure but takes about 8 hours start to finish and will involve an overnight stay at Yale. Once we have all the details and the timeline, I will post with more information. We were told by the surgical coordinator that because it is an MRI-guided procedure, there is only one operating suite in all of Yale that is equipped for laser ablation, so it’s unclear how quickly I’ll be able to get scheduled in.

Also in the less-than-good-news category, I’ll have to continue taking these lovely anti-seizure drugs for at least six months to ensure no further episodes. The doctor assures me that my body will adjust and I will feel less spacey over time. I’m looking forward to getting my short-term memory back under control, as it is ridiculously wonky at the moment (if I owe you an email, text, or any other communication feel free to remind me at any point).

Finally, we wanted to thank everyone for the outpouring of support in the wake of my Dad’s untimely death, both in your kind messages and cards and your contributions to my bucket list fund. Unfortunately, I was not able to make it to the memorial service due to the risk of flying cross-country in my present condition (the doctors couldn’t assure me that I wouldn’t have problems with the air cabin pressure and my head). But Cas and his terrific boyfriend Spencer were able to make it out to the celebration, and I was able to FaceTime in to the memorial service on Sunday and see everyone and all the lovely photos and tributes to my Dad. I sure do miss him but know he is up there hanging out with the grizzly bears and keeping an eye on us all.

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.

img_5515