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

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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.