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.

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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.

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What the ACA Means to Me

kittensdiememe

*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.

Blog-o-riffic

Welcome to my new blog, Living with Stage IV. Take a seat at your space bar and stay a while.

If you were following me over at CaringBridge, thank you. I wanted a bit more freedom and platform flexibility in communicating with you all (such as being able to answer your comments and questions), and that’s a big reason why I’ve switched over to a fully functioning blog format. And while I plan to primarily use this space to keep my friends and family up to date on my health and to talk about the challenges of living with stage IV cancer, I’m sure I’ll also be veering off into other topics that impact my life and keep me up at night. That’s especially true in today’s political climate where the protection of our civil liberties appears to be as fragile and unpredictable as life with cancer at the moment. But I digress.

Let’s get to a health update first. My latest three-month follow up MRI of my brain was moved up to January due to some nausea I was having. The results were stable – some spots of metastases were slightly larger, some were a bit smaller, but no brand new spots were detected. I’ll go back in April for the next follow up scan.

I’ve had some right side rib pain for the past couple of months, which only hurts when I lie on or place pressure on the rib. When you have stage IV, your mind automatically goes to the worst place when any new ache or pain appears. Case in point – the ingrown toenail I finally had taken care of last week because at first I was sure I had some sort of exotic big toe metastases.

I have to remind myself that I’m almost 50 and of late, have not been very active, so the rib pain may very well just be a strained muscle. My bottom right rib had shown some uptake activity on my bone scans in the past, but nothing on the last CT scan (although the CT is an imperfect test for bone metastases). My oncologist ordered a simple x-ray that should have caught anything major brewing (nothing showed up). When I follow up with him in two weeks I’ll find out if any further testing is warranted. In the meantime, I’ve been trying to stretch out and increase my activity so if it is just a pulled muscle it will hopefully work itself out.

Other than the rib, I’ve been feeling pretty good physically and the fatigue has waned somewhat. I’m still taking my Perjeta and Herceptin infusions every three weeks; it’s been 14 months on those particular drugs and I’m grateful that they continue to work for me.

We are looking forward to a trip to Chicago in June to see old friends, show Tim around Chicago and my hometown, and to see Hamilton (which will cross one item off the bucket list!). If you are one of my Illinois friends, I’ll get in touch as it gets closer to try and find some time to see you!

hamiltonThanks for your continuing messages, visits, and cards. They always make my day a little brighter. I look forward to being a little more frequent in my posts now that I’m on the blog. If you want to be alerted to new posts, please feel free to sign up for email alerts by clicking on the Follow button on the right side of your screen.

Until next time,

Paula