“Happiness cannot be traveled to, owned, earned, worn or consumed. Happiness is the spiritual experience of living every minute with love, grace, and gratitude.” Denis Waitley
This blog is going to be filled with the story of my 2017 so far. This blog isn’t going to be filled with wonderful adventure stories and pictures from the Maldives or some other exotic location. It’s a long one and I hope you stay with me. I started writing this entry over 2 months ago on a day when I was sitting at my desk, looking at a blizzard outside my window. Today the seagulls are calling and the rain is out and I’m in flip-flops and I can’t see any snow in my view, just ocean.
New, years are supposed to be about new beginnings, fresh starts, new yous and better lives. That’s what I was hoping for. I entered 2017 thinking this is going to be my year. I had my travel plans all figured out. I was optimistic, happy and I was starting the year off in Hawaii. Not only was I looking forward to that for selfish reasons, but for my family and friends who could use the break from my cancer too.
Since returning home from Hawaii in January, everything that could go wrong with my health has and then some, and then some more. I almost don’t know how to write about it other than list things and total moments in actual time. So I guess that’s what I’ll do. You can either stay with me or sit this one out. Either way, I won’t be offended. “I’m not everyone’s cup of tea.” Julia Roberts
Time for me is strange at the moment. The last few months have felt like years and I can’t even remember yesterday. I signed up for Luminosity hoping that will help my brain get back into shape. From the testing exercises it looks like I need work in the memory and attention categories. Shocker, I always was on the verge of ADHD and Ritalin was mentioned at a recent doctor visit. I woke up this morning in a panic not knowing what day it was, if it was morning or night, if I was late for an appointment. This happens a lot lately after long nights of little sleep and long Cancerful days.
My cancer has spread, again, but to somewhere else, technically, even though it’s still in my brain, or I guess, on my brain, or around my brain. The cancer that was confined to my brain has now spread to the dura lining. The dura is the outer membrane enclosing the brain and spinal cord. I have two new tumors inside my brain as well. I have eight new tumors that the doctors can see in my brain/dura.
Recently at my MRI results appointment my neuro radiation oncologist pauses and starts the appointment without much small talk. That’s how I know. Depending on the severity of the results we either chat about travel for 5 minutes or he gets right to it. He is the same age as me, a genius in his field and I feel like I couldn’t be in better hands. His smile makes me smile and the way he pushes his little round glasses up. At my first appointment with him last year I asked, “Will you tell me when the shit is hitting the fan?” So at my recent appointment with the news of the progression, I asked him, “Has the shit hit the fan?” He said, “Well, no, but this is a game changer.” I have progressive brain metastases. But…so soon, already, huh.
We discuss my treatment options and he gives my Mom and I his recommendation. I cry a little. He hands me a tiny box of pretty horrible tissues. Surgery and radiation are not an option. He is recommending a clinical trial using an oral chemotherapy drug called Palbociclib. There have been encouraging results in patients with breast cancer metastases to other areas of the body. This clinical trial is focusing on brain metastases, which is new. The coolest thing about this trial is that my neuro oncology doctor designed it! I will have full body scans in 3 weeks to determine if the drug is working. If it isn’t then we will move on to Plan B, which is another clinical trial using a different chemotherapy. I have been asked a lot about immunotherapy trials. After asking my doctors about them, I was told that there has been little proven benefit for breast cancer patients so we have crossed this treatment off the options list.
I am in the ‘dark’ place. I’m sad, more sad and angry then I have been in a long time. I went to the doctor that day expecting him to say ok, there are a couple more spots that we’ll treat with radiation blah blah, piece of cake. I made a mistake having expectations of my cancer or at all. As I’m writing this I’m getting upset and mad and I’m pausing and rubbing my forehead. I’m fidgeting a lot, re reading and taking deep breaths. This is hard. I’m not comfortable with this at all. It is incredibly difficult to be positive sometimes. It is incredibly difficult to talk about the decline of my health and the progression of my disease.
So, instead of sitting on a beach in the Maldives at this very moment, or dune buggying or camel riding in Dubai, I’m sitting here in Maine waiting for my daily chemo alarm to go off. It has taken me a long time to finish this entry. So much has happened that I haven’t even covered at all. I have had to rewrite this entry several times. I’ve been thinking a lot about all the things cancer has taken from me so quickly this year and from the last 3 years. The peace that I had found last year with my cancer feels so far away from me now.
It feels like it was just yesterday that I was having that conversation with my doctor about my cancer being in a good place, that I didn’t need to worry yet. It may not have been yesterday but it was only 3 short months ago. How quickly things change, without warning even. When cancer progresses, it’s like sitting on a boat, all alone facing a rogue cancer wave. It can be an unpredictable terrifying Cancerful event. I felt safe three months ago. I don’t feel safe now. I’m on a life raft in the Sea of Cancer, hoping for rescue but there isn’t any in sight.
From January until now this is how I have spent a lot of my time:
- 12 appointments locally totaling approximately 19 hours
- 7 appointments in Boston totaling approximately 39 hours
- 4 days at the local hospital for IV antibiotics every 5-8 hours
- 5 weeks of oral antibiotics while being bed ridden for two subsequent infections in my body
- 2 medical procedures to surgically open and put in drains for infections
- 2 brain MRIs
- 1 bone scan
- 2 CTs of my chest, abdomen, pelvis
- 4 EKGs
- 1 spinal tap which resulted in bed rest and heavy pain medication for over a week for a spinal headache
- 2 new hormonal treatments which has induced immediate menopause. One treatment is an injection once a month and the other, a pill everyday.
- 1 oral chemotherapy for a new clinical trial
- Labs every 2 weeks, which this week has been 3 out of 5 days due to being neutropenic. (Neutropenic means that I have an abnormally low level of neutrophils. Neutrophils are a type of white blood cell. In order to continue on the clinical trial my neutrophils need to be at a minimum level of 1,000. Two weeks ago my neut’s dropped to 330 and my chemotherapy was cancelled until my counts improved. I have just this week restarted the chemotherapy)
- I take 12 pills every night
- I have 4 oncologists. 2 breast oncologists, a neuro oncologist, a neuro radiation oncologist and I have 15 doctors listed in my phone.
At this stage of my cancer it feels equivalent to a full time job. As if cancerschmancer isn’t enough, my ID was stolen and some a-hole tried to spend $5,000 worth of furniture at Bob’s in Illinois. Bob’s sucks, should of gone to Jordan’s. The other disappointing event was #45’s win and I’ll leave that at that. Oh and my cat is hyperthyroid and potassium deficient, 2 more medications to add to the day and to remember, awesome.
Now onto the fun topic of the financial side of cancer! Yay! If anyone knows me at all you know I have a big voice when it comes to the medical insurance system. Without inserting an excel spreadsheet I broke down the numbers and this is how bad it has been for me and I know many others. My only income is social security/disability. I’m unable to work and haven’t exactly found something in my life at this point to make money doing. I’ve exhausted any money I had from the sale of my house, savings, retirement funds and a fundraiser put on by my oldest friend. Since being diagnosed with breast cancer just over 3 years ago I have spent over $35,000 on medical bills, premiums and other medical expenses. As of now 80% of my monthly disability income goes towards medical bills, health insurance premiums, medications etc. This leaves me with less than $200 a month to live on. I’m managing. I live with my mother. I have a wonderful space here and Oskar can be here with me. Up until now, I traveled on points from years of piling up medical bills on 5 different credit cards.
I pay my $500 a month health insurance premium and a monthly minimum payment towards my hospital balances but that’s all I do. I will most likely be making payments towards medical bills for the rest of my life. I have been advised by the billing department at MGH that I will be sent to collections, small claims court etc. due to not paying these balances in full within 18 months. That would mean I would have to pay $666.67 per month towards my medical bills. What am I supposed to do? I have bigger things to worry about like the fact that I’m fucking dying and I have other bills, other responsibilities, like making sure I have a will and what I want for the end of my life, and a car and dog food and chemo and prosecco.
So, sorry to all of the medical organizations I owe money to but I’m literally doing the best I can and the best I honestly would want to do for you. I’m also sorry to tell you that you’re not going to get your $12,000 right now or most likely ever. I finally get it after 8 years of being a medical practice manager and a billing manager. I finally understand all those emotional breakdowns over the phone with patients struggling financially, as I sat in my big comfy office, probably enjoying a venti latte (j/k I don’t even like those, coffee black please). That time feels like so long ago. I think that’s what we call irony? I was also just notified that my insurance plan changed November 1st last year and my deductible was increased by $3,000 so I owe them even more money. Is this even legal? Turns out…it is.
In 2016 I was receiving a government subsidy for my health insurance due to my projected low income. The government was paying $100 towards my monthly health insurance premium, which was fantastic! When my projected income for 2017 changed to ZERO due to my illness, the marketplace determined I was no longer eligible for a marketplace plan or the deductible discounts because I qualified for NH Medicaid. I apply to NH Medicaid and find out they won’t cover out of state medical care (makes sense I guess). However, when I went to SNH ER the neurology doctor on call refused me as a patient… something about protocol, don’t get me started. The local hospital sent me by ambulance in the middle of the night to Mass General Hospital in Boston. So I have to keep a private health insurance plan to allow me to continue my care at MGH. Just as an extra F*%K you the government requires me to pay back the subsidy. So SORRY, but I didn’t exactly plan financially from birth to be ‘disabled’ and dealing with a terminal illness at the age of 38. My mistake. My bad.
“The American Heath Care System’s dysfunction matches its brilliance.” BJ Miller
As I’ve said before, one cannot underestimate the benefits of having a good therapist. She listens to my rants about the system some days, other days she just lets me be quiet or cry. There is rarely a happy medium to my moods in there. She’s got my back. At a recent appointment I was telling her how confused I was about everything happening to me. She just said one word that made everything make sense. “Your body is in turmoil.” We talk a lot about time. Or I talk a lot about time, about having too much time, too little time. We talk about the connection between time and freedom. There is such a thing as feeling trapped in time with too much freedom. We talk about feeling lost within time and the panic that can accompany it. We talk about the exhaustion of being strong and weak over and over again. We talk about my writing, which she reads and says all the time, “needs to reach a larger audience.” The idea of me doing discussions at the hospital for the doctors has been mentioned and I’m actually open to the idea. The anxiety that accompanies time for me has been made worse by my desire to turn all of this into a book. I fear that I won’t have enough time, especially when I go radio silent for almost three months.
Time for me is also especially now, connected with loss. Loss can be in any form, loss in travel and loss in the form of people or pets or things. I’ve been part of a new club, The Cancerfuls (anyone who has/had cancer) for three years now. It is inevitable that we experience the loss of each other. For some of us we move forward towards remission and for some of us we move toward a progression in our disease.
Last year I lost Argentina and Patagonia. This year I lost the Maldives, Panama, Florida, Colorado and Hawaii so far. It’s been a rough start. A year ago I was having an emotional breakdown in my closet unpacking from a trip I never went on. Almost a year to the day I’m doing the same thing minus the breakdown. Now, I’m just pissed. I should have known better. Nothing like cancer to smack you around a bit, making it clear that some serious reprioritizing needs to happen. Cancer and the clinical trial come first for now. I need to accept that, if I want to stay in this trial. I’m just tired of losing, of having to re adjust to things being worse than they were. I’m never readjusting to a new great thing in my life. Recently I was looking through a journal from February I found a couple of interesting entries. I never said I was an artist.
I’m not much of a pray-er and I would never normally write anything like that so I was a bit surprised at myself. Lately, there have been important people in my life talking to me about God and faith. I listen, carefully and genuinely, despite my own beliefs. You never know what you will connect to and I have an open ear for almost every opinion. I grew up finding comfort and faith in other things besides the Lord and that hasn’t changed now that I’m an adult. I heard a word this weekend and I already forget where. I didn’t know what it meant or if it was a real word so I looked it up. Omnism. According to Wikipedia, omnism is the recognition and respect of all religions. It also says, “ it can be seen as a way to accept the existence of various religions without believing in all that they profess to teach. Many omnists say that all religions contain truths, but that no one religion offers all that is truth.” I connect to this, big time. Maybe I’m an omnist.
It occurred to me over the last few months to maybe try reading the bible or other religious writings recommended or sent to me. As I sit here writing this I look up over the computer, at my feet resting on the coffee table and I see a big stack of books that I’ve just recently finished or are reading currently. All of these books have been incredibly inspirational. Breast Left Unsaid by June Calligros is a memoir of her battle with breast cancer. This book and her language and tone are eerily similar to mine. Alone in Antarctica by Felicity Aston is a memoir of her solo ski voyage across the Antarctica. It’s What I Do by Lynsey Addario is a memoir about life as a young American photojournalist in war torn countries across the world. This book and the way she writes her story had me hooked from the first page and is by far one of my new favorites. Today I started reading Maiden Voyage by Tania Aebi, a memoir about her 2 ½ year adventure sailing around the world by herself at the young age of 18. I’ll save the Bible for later I think.
There’s a screaming theme when I read these titles. I connect to what these women struggle with emotionally and it gives me some peace as I spend time reading their stories of strength and bravery. I think that’s why I love them so much. It lifts me up. I’m going through a challenge and a struggle just as they have. In some place in the back of my mind I feel we are the same on some level. Reading about real independent women who need a change in their lives or have a calling or desire for adventure, soothes me. I’m living through their stories with them as I read.
Their solitude and terror of being alone but courage and determination are more than inspiring to me. I understand feeling the need to change your life. I understand the true desire for adventure or spiritual quests. I understand the need to be taken seriously. I understand some of their fear and loneliness. I understand some of their physical challenges. I understand being vulnerable. In the end these women succeeded in their journey. They found love along the way and most importantly themselves.
I believe if I didn’t have terminal cancer I would try an adventure of my own. I mean definitely not in Antarctica, but maybe the PCT or move around the South Pacific or just work my way around the world. Felicity Aston who skied across Antarctica said in her memoir, “…there is a part of my desire for adventure that I can’t attribute to parental influence. Much of it is simply an integral part of who I am, as tangible and intrinsic as my height or the color of my eyes. From the start I couldn’t help but see the growing possibility for adventure wherever I happened to be.” I too, have also felt this way during almost all of my travels.
I met with my PCP for a follow up last month and he knows I’m sad and I him. I normally have some travels to tell him about but this time I don’t. He has known me for a long time. His nurse and I also have a special connection. We go way back and she goes way back with my Mom. She cries, hugs me and tells me she loves me. She tells me as she walks out the door, “You have a light. You have a thousand angels watching over you.”
I’m so grateful for moments like these, pure human kindness, compassion and empathy. You will never be a good doctor or nurse or any healthcare provider or any human being if you don’t care for people. My PCP knows how disappointed I am at all of this SH%T happening. He steps out of the room for a moment and comes back in with his favorite guitar. His case is covered in stickers from his earlier days and he tells me about some of their stories. He takes the guitar out and I can see his face light up. This is his thing, like travel is mine! He plays and I instantly well up with tears because he’s playing one of my most favorite songs, Blackbird.
Wouldn’t ‘Cancerland’ be so much more fun if we had relationships like this with all our medical providers? I’m not naïve however and understand that this sort of appointment is not the norm. I appreciated it though and it made for a special moment between patient and provider and a special moment for me in an otherwise regular Cancerful day. I see so many different doctors in different specialties and have a different relationship with each one of them. I wonder about their own lives, their families. I have so much respect and admiration for the care they have shown me. I have and do continue to put my life in their hands.
“Blackbird singing in the dead of night
Take these broken wings and learn to fly
All your life
You were only waiting for this moment to arise.
Blackbird singing in the dead of night
Take these sunken eyes and learn to see
All your life
You were only waiting for this moment to be free.
Blackbird fly, blackbird fly
Into the light of the dark black night.”
These feelings I have about provider and patient relationships is the theme to a Ted Talk by BJ Miller I recently listened to “What really matters at the end of life”. BJ is a hospice and palliative physician who lost three limbs when hit with an electrical current. His talk and his life’s passion are end of life issues for his patients. He discusses the importance of making sure he builds a graceful end for his patients. He talks about how there needs to be a better understanding of patient needs. Everything can change so quickly and addressing a potential change in a patient’s priorities is of the utmost significance. “The great thing about necessary suffering is that it is the very thing that unites caregiver and care receiver human beings. This is where we are finally realizing, healing happens.” BJ Miller
These relationships that I have had with my caregivers have ultimately made me re evaluate relationships of my own at times. At times there seems to be a constant coming and going of people in my life. This can be difficult for me. There’s nothing like feeling rejected because you have terminal cancer. I do understand the extreme of emotions that can occur within illness and friends and family but it hurts me incredibly when this happens in my own life. I wish I could say that I’ve never felt the sting of the disappearance of someone from my life because of my cancer. Sometimes I really love meeting new people and forming new connections traveling. Some of the closest relationships I now have are from traveling.
Sometimes it seems there is a fascination for me by the new people I meet. “BUT you don’t look sick!!!” There ultimately seems to be more attention paid to my illness than my actual character. How bout I just sit here behind these bars, like a zoo animal, and let you ooo and awww about my cancer? The constant “How are yous?” and my lack of decent responses. Someone asked me recently after I responded to their “How are you?” with “Not well”, whether it was emotional or physical. I immediately responded with “One equals the other.” I’m generally a lot friendlier but between being chemically forced into instant menopause and being taken off medications I’ve been on for a long time because they’re not trial compliant, I’m a little fragile, a little “mouthy” and clearly a lot moody.
My recent intolerance or impatience with awkward cancer conversations isn’t exactly new, honestly. I’m sick. I know it’s hard. I know it’s hard to accept. I know it’s not right or fair. I know that you are all sad and so am I. What I don’t need to hear anymore is how much people can’t believe this is happening. It’s happening, I’ve accepted it, now please do yourself a favor and accept it too, so we can get back to just being you and me, because I miss that. Please don’t make me have to be your therapist for this wonderful lunch we are having. I ask myself if this is too harsh but convince myself I’m allowed to feel this way. But I mean, lets face it, I’ve always been sort of a B&*%H some would probably say. As a child my Mom or some adult was always calling me “fresh” or threatening me with a bar of soap.
My freshness seems to be amplified at times during long waits in waiting rooms. We are all Cancerful in Cancerland. We all belong to this place. Yet it’s a strange universe where no one talks to each other. We barely look at each other and people whisper. This has always bothered me. At my last appointment a woman approaches me in the waiting room as I’m walking out of the lab and asks me if I can let her into an exam room because her relative is in there. I was very confused and then I realized she thought I worked there. I saw several people looking at the exchange and I responded to her, “I’m sorry, I’m a patient.” As if it wasn’t clear enough already from the bandage wrapping my arm from that lab draw I just had, for the second time because they forgot something and the big white patient bracelet I’m wearing.
Weird things happen every time I’m at the hospital for an appointment. This most recent time my Mom and were sitting, waiting in the neuro oncology unit and I excused myself to walk the hall. The unit is on the 9th floor and has a wall of windows looking out over the Boston skyline. It’s beautiful. As I was waiting for my name to be called looking out at the view I hear Blackbird. I turned instantly and there was a man sitting there just playing his guitar, a volunteer I’m guessing. MGH does this in some departments and I can’t praise these efforts enough. For me, music, especially someone volunteering his or her time to provide us comfort, calms me immediately and reminds me of human goodness.
While I was in the hallway, a gentleman sitting across from my Mom and I in the waiting room says to her, “Boy she looks anxious.” My Mom explains that we’d just received some disappointing news on my last scan. He exclaims, “My wife has been terminal for 19 years!” I’m sorry, but is that supposed to make my Mom or myself feel better, cause it doesn’t, but thanks. I’m sure it was his immediate reaction and his intention to help us feel better but sometimes things are better left UN said. I’m sensitive right now and so is she, understandably. Either way, it’s a good thing I wasn’t sitting there because there’s a good chance I would’ve been ‘fresh’.
To add insult to injury (I think that’s the phrase) I was in the lab this week and witnessed a young guy being evil. He was lucky I was so fragile at the time because I would have close lined him on the way out. I was wearing a mask like a good girl because I’m neutropenic (basically means I’m not allowed to get sick, at all) and out of the corner of my left eye saw him snap a picture of me with his gigantic cell phone. I was so taken aback by this that I couldn’t even move, let alone respond. I wasn’t even sure if that’s what happened but what else could it have been? So, I did this (see pic below) for the next time, except I’m not going to use permanent marker again. Not the most brilliant idea I’ve had.
If you have made it this far in the blog, thank you. Thank you for caring that much. I do apologize for the delay in an update of my health. As of today I’m actively taking my chemotherapy everyday. The doctors have reduced my dose in hopes of preventing another round of neutropenia. I’m doing the best I can. I can’t say that everyday I even get that far. Its been tough to enjoy life during these times. We’ll find out in a few weeks if the drug is working and whether I will continue on this clinical trial. I have no feeling about whether the drug is working or not. I can only hope that all the prayers being said for me and my own hopes and faith are enough to provide me with some more time and a bit more freedom.
“Prayer is an act of love; words are not needed. Even if sickness distracts from thoughts, all that is needed is the will to love.” Saint Teresa of Avila