Wednesday, August 31, 2016

The taper begins

A quick health update. Got a text message (what service!) from my onc this morning saying that my liver levels have improved enough to start the slow tapering of my steroid medications. Woo hoo! Right now the plan is to taper these and continue to watch my labs improve, then scan again in late September and decide on one more combination dose or straight to the every other week single agent. 

Today I feel that I've begun to find somewhat of a balance with the high dose steroids. I had to restart anti-nausea meds to get through lunch without feeling sick and I'm very bloated. ZzQuil gave me a little extra sleep last night and didn't make me too groggy this morning but it was a little hard to get going and I'm still a pretty tired momma. Sitting at a Starbucks trying to remedy that as I type! Miles better than yesterday, though. 

A strange muscle weakness has started in my knees - I was warned about this with the steroids. Seems strange as steroids are generally associated with strength. 

Just wanted to give you guys an update and check in! It's a lovely sunny day here in Nashville and James is having his first (half) day of Mother's Day Out while I get a couple of things done.

Love to you all,

J.B. 

Friday, August 26, 2016

A health and treatment update 8 26 16


I wanted to post a lengthier update on my health to fill in some of the gaps I left with my quick post and to let you know how I’m doing. My list of other type of posts with musings on what I’ve been through and what I’ve learned keeps growing – one might follow tomorrow but I figured the health update might take up enough of your time today :)

Firstly, I’ve been taking rather high dose Prednisone since Tuesday evening (60mg, 2x/day). The primary concern was two of my liver related lab results from my pre-treatment labs that I did on Monday. Leading up to this I had had several symptoms that I assumed were related more to travel fatigue and other things but turns out can be related a lot to liver trouble. Dry mouth, fatigue, dark urine, fever and chills, extreme night sweats, even the low appetite and nausea and vomiting (although that was likely due in part to a separate attack on my gastrointestinal linings). In general, I felt like I had a slow onset flu – even thought I might have Zika! And I believe it began on the day I got my sunburn in St. Lucia on the boat and took Dramamine because I attributed lots of sleeping and fatigue to the Dramamine for a while.  Because there is no concern of cancer in my liver and because my prior liver labs were normal, this is almost guaranteed to be a result of the immune therapy combination treatment that I am on. The other concerning labs (though also not surprising) is that my thyroid has followed the typical immune attack pattern of hyperthyroid to hypothyroid indicators and I require treatment, possibly for the rest of my life (but hey – I’ll take it!)

What all of this tells us is that my immune system is in HIGH, HIGH gear. This is NOT a bad thing when it comes to this type of immune therapy treatment. In fact, the goal is to create a state of “brakes off” immune healing. We already know that the treatment is working well for me thanks to the glorious interim scan results (which I can still hardly believe). I have asked Dr. Bauer (my very communicative and intelligent local medical oncologist) whether we can do another scan now but he does not think exposing me to more radiation is necessary and has agreed to take the stance that we can assume at this point it has already shrunk more (and possibly even my highly optimistic view that it is ALREADY toast).  So, enter the steroids.. they put the brakes on the immune system. So… we took some specific brakes OFF with the treatment and now they put some general (non-specific) brakes back ON. So, what the steroids do is CALM DOWN this high gear. What that has meant for me so far is, within 24 hours (!) less fatigue, returned appetite and no nausea/vomiting, and no more fever and chills. Now that it is a few days later I’m already getting even more energy back and had almost no night sweats last night. Still a bit of dry mouth and a couple of other things but the relief is wonderful and I’m so, so grateful to my family for stepping up and stepping in at a moment’s notice, as always, to help with James when I wasn’t feeling very capable including Danny, Junior, Kelly, Lydia, and my mom over these past few days. You guys are so important and valued, so thank you again and again. 

What all of this tells us is NOT that my treatment is going to immediately stop working on what it is supposed to be working on. A few things I DO know is that the 1) my body was in high, high fight mode and 2) as I said, the specific brakes (that we want off) are still off because my body has already made memory T-cells that have been in there, healing this thing and are on the lookout for more. 3) Because the general brakes are being put on, there may be less of the fighters produced and circulating during steroid therapy and over time they may start to forget, given that I’ve really only had three rounds so far, but I don’t expect this to mean that things go right back to where we started before this treatment. In fact, this may hold steady or even shrink while I’m on the steroids. So now, it’s only a matter of getting the rest of my body stable enough to think about when to start back on the treatment and IF I’m even going to get the 4th and final combination dose vs. just starting right in on the single agent (which is less effective for existing tumors but much less toxic on the body). If I didn’t make clear before, after the 4 combination rounds, I would have switched to a single agent every two weeks for 2 years as long as it continued to be effective. So, we may just jump right into that if things don’t calm down in a big way. However, if my side effects are any indicator, things have really calmed down already!

So, best case scenario the labs today (Friday) show significant improvement and we can start titrating me off of these steroids (probably 8 weeks of titration!) and get things back on track. If not, I will be getting biweekly labs and as soon as there is improvement we will begin the titration. In the meantime I have high dose steroid side effects to look forward to such as energy (yay!), irritability (growl), sleepless nights (owl) and apparently muscle weakness (tell me how THAT makes sense with steroids!). So please bear with me if I seem strange and/or antsy. I will be making lots of extra time for stress management and relaxation to try to balance these things but it will likely be difficult to be perfectly pleasant all the time :)

Interestingly, the one major side effect I was continuously warned about with the immune therapy has STILL not occurred (knocking on all the wood around me) is Major! Disruptive! Explosive! diarrhea. Like 20 times a day I’d be running to a toilet… So, yes, I’m thrilled to report that I’m not suffering from that horrible affliction.

Just wanted to give everyone more information about what happened, what it means, and what the plan is. I’ve been getting a lot of questions, and reasonably so – I forget that you haven’t all been through the crash courses in medical oncology and immunotherapy that I have in the recent months!

The “take homes”

1)   I’m feeling so much better already!
2)   My family is awesome
3)   This isn’t the end of my treatment or the end of its effectiveness
4)   I don’t know yet exactly when I will get another scan or start treatment again, it depends on my labs 
5)   Yay for no explosive diarrhea 

Thanks for listening and caring!

JB

Tuesday, August 23, 2016

No round 4, for now

The doctor chose to pull me from treatment and start steroids and synthyroid immediately. My labs from the day before showed very high liver numbers and since I don't have cancer in the liver it's likely treatment induced hepatitis. Best thing for me is to pause on treatment for now and work through these steroids to get things to calm down. 

I've continued to have nausea and lately I've been so tired (apparently I have treatment-induced hypothyroidism to thank). Other side effects so far are depigmentation (yes, I'm losing my freckles!!) and bad dry mouth. 

I've been assured that this is the safest plan of action moving forward. Will wait until my labs show the liver has recovered before we decide about returning to treatment. Will be weeks if I do, due to tapering steroids. Such a shame as its been working so well! Not to loose hope however, this cancer may already be toast and the hope is that this is just on hold until things recover a bit.

That's it for now, just a quick update! 

Friday, August 19, 2016

I Want To Be Heard

 

I've had a couple of recent 'mom wins' that have made life easier and helped me feel an ever-elusive feeling in parenthood- 'Hey, I got this.' I've needed some mom wins lately, after being apart from James a lot during treatments and my recent, restorative (but long) Caribbean get away. One 'win' is that I have finally landed upon my son's latest 'instructions manual.' Yes, my child requires instructions... I realize not all children do and I've accepted that he is a very special, complicated and wonderful creature who is a bit too exotic for me to intuit all of the time, hard as I try. Finding the instructions for my exotic creature hasn't always been easy and has involved a lot of trial and error. When the right instructions finally find us it feels like divine intervention; James' often come in the form of a well researched book that helps explain the 'sparkly' kids. Sparkly is hard. Sparkly is great.
Lately, I found 'Happiest toddler on the block' by Harvey Karp, M.D. This book has me making my own mini tantrums using something akin to 'cave man speak' (he calls it toddlerese) and probably looking rather silly in public- but, I tell you what... when I use it right? No tantrum. Not a one. The basic idea is that toddlers loose their ability to think clearly when they are upset and that responding to their wants and wishes won't cut it until they are 100% certain that you GET what they WANT and NOW.  Essentially, they want so much to be heard that simply being shown they are, indeed, heard is enough to calm them to think more rationally.

The other 'mom win' is that I've found a far-reaching wearable audio baby monitor (it even has vibrate mode) that I can use while busy in the field or barn with the horses or chickens. I used to avoid going to the barn during my son's nap or after he was in bed because with a toddler, a continual line of communication and monitoring is important for the secure feeling of both mom and tot. When he knows I can hear him, he will trust that I can run to his side if something were scary or wrong and I, hearing him, can trust that he is safe, despite being outside of my arms reach. I can use both of those arms to attend to the other creatures on the farm that need me. An open line of communication is key to trusting, loving relationships across the board.   

Lately I have been spending a lot of time considering prayer. My previous post about 'the helpers' had quite a bit to do with prayer. An offer of prayer has been a gift I have gotten to open so often lately, expressed both in person and in the pages of the daily cards that come in the mail. I know there are several prayer groups that continue to honor me with their time, week after week. I also know that countless more individuals also honor me with their thoughts and prayers on a daily basis. I have also attended the healing prayer service in the chapel in my church almost weekly.

Prior to my diagnosis of Mucosal Melanoma this January I considered prayer to be largely for two purposes; to express gratitude and to make wishes known. I never considered prayer to be for the purpose of shifting the great divine plan for our lives. To be clear, I still do not. I believe that there is a plan and, should we choose to feel gratitude for it, it can be wonderful and spectacular. Every morning when I wake up, I try to make one of the first thoughts I have to be "Thank you for another day." I encourage you to try this. However, beyond this, my own understanding and appreciation of prayer have graduated to a greater understanding since January. I have experienced personally, and witnessed, functions of prayer that I never fully understood, or appreciated and that I still have much to learn about.
   
I WANT TO BE HEARD.

I WANT. We are not very different than we were when we were all toddlers. Wanting something very badly and not getting it is hard for anyone of any age. The threshold for what causes this and how we express it may change a lot across our lives but the basic principle is the same. It is so very difficult to think with clarity about our circumstances when our wants don't match our foreseeable receivables. Using prayer to either make our wishes known to the universe or ask for peace can shake up this problem and calm us enough that we can think more rationally and be open to finding or accepting the things you might need. This may come in the form of searching online for a book about sparkly toddlers, or it can help you be open when people come into your life offering help. When you are upset and feeling independent and defiant against life, including cancer, it can be hard to accept the form in which help comes to you, or harder yet -- asking for it. Also, when calm you are more capable, and accepting, of seeing, through adversity, what might be a 'calling' or 'purpose.'  Finally, it's been in moments of clarity like this that some of my more helpful mantras have come to me. A favorite, "You're not going to die today: You're not going to die tomorrow."

TO BE HEARD. We want to know that someone or something is out there to hear us. That we aren't simply shouting our wants into a void, without even deaf ears to fall on. We don't want to feel alone. We want to know that we can be heard, and right away, even if those arms are otherwise occupied helping other creatures. Here again, an open line of communication is key to trusting, loving relationships. Prayer helps us to not feel alone. Similarly, knowing that others are thinking about and praying for us strengthens our voice, strengthens our resolve, and helps us feel supported by our family, friends and community. We feel heard, but multiplied by the hundreds of other voices that are singing in unison with our own. There is no dark void. The ears are not deaf.

We are heard.

Saturday, August 13, 2016

How I got out of that dark place & The Helpers

 

 

Let me be clear about where “the dark place” is. The dark place is where I spent a good bit of my time after being diagnosed. Mostly when I was alone or not busy. What did it look like? WellI ended up sitting in a lot of strange places. Kitchen counters, middles of floors, in the grass—I was quite literally overtaken by gravity wherever I may be at that time, as the weight of the “woe is me” bared down on my shoulders.  There were sudden bouts of ugly crying which, somehow, blessedly,my 1-year-old didn’t see as abnormal. Instead he continued cheerfully flinging dirt around or running away from me as fast as he could. I saw death and finality EVERYWHERE I turned. Nightly news? Death. Roadkill? Death. The end of a song.Death! I allowed it to encircle my space like Eyore’s cloud but punctuated with turkey buzzards instead of raindrops. It also happened when I allowed myself to stare at my son and attempt to use every fiber of my creativity to imagine what he would look like when he was 5, 10 or even 50, knowing I would never get a chance to see it with my physical eyes. What is surprising about this dark place is that, while I worked very diligently and with great effort to get up and out, once I found myself free I turned around and realized I’d only come one small step. Indeed,it’s now possible to slip back down with one misstep and fling myself back out with just a shake and shudder of my shoulders.  


While the arduous process of freeing myself of this place was a very personal odyssey in many respects, (and I plan to write several other posts to highlight some of the things I felt helped me along in this effort) I feel that it is most appropriate to first acknowledge that the ability to even begin this journey is largely due to the solid foundation of emotional, spiritual and functional support provided by my community –many members of which I had not even met. The volume and persistence of support that has been offered to me has been the most surprising part of this journey. I have never in my life felt so loved and lifted up. Since I was first diagnosed I have been getting calls, cards and messages that people are praying for me and every single day I go to the mailbox I have at least one note of support or kind hello. Every. singledaythat the mail comes.  What is truly a blessing it that I have been given the opportunity to see the best side of people every day, time and time again. It's a great gift. 


It is amazing what strangers who even guess at what I’m facing will do. The meals from church (the church that I had only recently started attending) and calls from the clergy began right away. I have been offered countless kind words, had more than one cab driver pray for me in their car. I have had people in the service industry refuse that I pay for my hair cut or massage – All perfect strangers who sometimes know only that I am facing something difficult. 


From people I know, I have received so many gifts and flowers, even with those I have lost touch with over the years. Not long ago, after weeks of daily cards from my sorority sisters, most of whom I haven't spoken to in years, I received a box filled with the most generous gifts and extremely generous gift certificates from them to Whole Foods and Southwest Airlines and even a very generous donation to the Susan Fazio (Mucosal Melanoma) Research Foundation in my name. I had happy tears as I went through the box, spending so much time considering each item that I had to finish opening it in three separate sessions! I have had several people reach out to me through social media and offer an amazing amount of support and resources and time and friendly words. I have even had the opportunity to make peace about the past and rekindle old friendship sparks.  


My family and close friends have been a gargantuan, solid, sheet rock for me. Even now, I can relax while on vacation knowing my son is with my parents who are happily entertaining him so Danny and I can get a restorative break (even after weeks of both of them spending half of their time at our house doing the same thing while we are there). James is so well cared for by all of our family that I’m worried he’s going to grow up thinking that every child gets eight parents/playmates all to themselves. My dad has been our farm hand and James’ best friend and my mother flutters around the house cleaning constantly so I don’t have to – my water glass keeps going mysteriously missing after she swoops it up to clean it before I’m even finished. My sister has escorted me to several appointments and trips to Houston and even scratched my nose when I was getting two-armed leukapheresis for three hours and couldn’t move to do so.  My friends have offered me hours of “text” support and come over to cook dinners and entertain me when I’m low on energy or wanting to get out of the house. The love and support offered by my husband? That’s a separate blog entry entirely. 


The biggest challenge for me with all of this support? Accepting the help! Partly, it was that accepting help in the beginning meant acknowledging that life had to change and it was also aconstant reminder that it had. Also, I’m a pretty independent person to start with – a favorite family story is me insisting “My do it!” to everything at a young age. And… let’s be honest it’s also difficult to have parents essentially living with you part-time when you spent your childhood (at minimum the entirety of high school) looking forward to living without your parents. But, all things aside, I don’t know what I would do without their helpand love


I remember hearing within the last few years, in the wake of several human-perpetrated acts of violence and destruction, thatit can be therapeutic to focus on the helpers. It is in our nature to help and to give. For me, during my disaster, I can focus on these helpers and breathe more easily. I get to see their glowing, wonderful souls shine through as they give and help and give, and repeat. 

 

Thank you




 

 

**Disclaimer**  I feel that I should be clear that I’m not licensed as a clinical psychologist yet and that this blog is intended for personal shares and not based at all on actual science or research unless otherwise noted. Please do not consider any of my blog posts a professional recommendation. 

 

Sunday, August 7, 2016

Listen

 


This week we are on a much needed vacation. It's become strange for me to travel and it not be related to treatments or appointments. We booked a week long stay at a resort in St. Lucia called The Body Holiday. They offer organic foods and wines, a large range of physical activities and relaxation experiences and include daily spa treatments for your stay. The idea is that vacation should be about restoring yourself to health not only by taking a break but by focusing on your body and mind in an active way that allows it to hit the reset button. We are looking forward to this journey and healing is such a beautiful place.

That I'm on a "cancer journey" feels like a tired and cliche thing to say. However, I considered at length a more appropriate descriptor of the experience and there doesn't seem to be a much more accurate depiction. A journey is a experience with both movement and stillness; it may or may not have a intended destination; you can find yourself alone in a clearing or blinded by a surrounding of weeds and friends.

Sometimes a journey has no clear starting point, or at least none that you were aware of at the time. My experience with cancer started in just such a way. After my son was born I spent most of my day at home with him and my once academically engaged mind was left somewhat idle. For many, the birth of another human evokes wonder- at life, and how it progresses and ends. Getting to watch a new being grow and learn and embody life itself seems to me the greatest gift anyone could be given. After the initial frenzy of caring for a new life became more routine, my now hungry mind clung to these themes and dwelt there with fervor. I remember a night where I woke with a start at 4am and was brought to tears as I felt the weight of my mortality more heavily than ever before; my 'death grip' on life began then- when my parental responsibility to care for my son was compounded with the inexplicable joy of watching him grow. The stitches of the seam I had so carefully placed, to hold back these thoughts that first haunted me as a teenager, were exposed for the frailty of the trivialities it was comprised of and ripped wide open. We are so fragile. We are not guaranteed tomorrow or the next moment or even the past. After this night, I moved through the world in awe, relishing each moment with fierce adoration. Each night as I closed my eyes I prayed to wake up the next day. 

When we prepared to move to Tennessee and my mind once again became busy with tasks and information about looking for a home, moving our things and exploring a new town these thoughts were stuffed back down into the old seam they had burst from. Stitched once again with business. Then, on January 28th I was sitting in our Tennessee living room and had just put my son down for a nap. Things were quiet in the house and I was resting- perhaps for the first time in weeks. For some reason, at that moment, I recalled the time period in Kentucky when my thoughts were ever on the 'big questions.' I remember reflecting on it with nostalgic fondness- it was difficult and dark but a beautiful gift to move through the world as if at any moment it could all slip through your fingers. I had this exact thought: "I wonder what it would take to get me back to that place again." That very afternoon I was told my biopsy was positive for melanoma. 

No one in my family has ever had cancer. Not in my immediate family or extended family. I had no reason to believe my symptoms and health problems were at all related to cancer. To me, the biopsy was a formality to be  before I could have the 'cyst' removed. Of the first questions we asked the doctors after I was diagnosed was "when?" While no one has given me a clear answer, I was generally told that it developed "not long" before I first noticed the 'lump.' Perhaps a few months. But I know when. My body knew when. 

The brain is an amazing thing, and is constantly interacting with our body. Surprisingly, the vast majority of this action is beneath our conscious awareness. It has many things to tell us but doesn't always do so very clearly. Listening to it, when the traditional evidence isn't there, is a difficult thing. It can be difficult to notice or decipher what we are being told. Once you do receive a message, it can take great courage and strength to follow through on what we find. To trust that 'little voice' that can so easily be written off based on how we view things like "intuition" and "gut feelings," particularly if our analytical thoughts are opposing. Or perhaps believing that such a thing can exist is the challenge. Or you may believe that these messages are always external to us. The truth is that they are there. Be still and listen.