This May 27th marks the close of my first year of blogging. I got into it by happenstance. Last May I was adjusting not only to entering the clinical trial at UPenn but also to the ambitious cross-country travel for this experimental treatment. I was hobbled by my first bout of bursitis. Not able to move, I explored the world of blogging until I had my own site. (Thank you, WordPress and Kim W.!)
The blog expanded the world I communicated with beyond the valiant friends and family listening in via my Caringbridge site to whoever might want to find me. I am still learning the value of tagging each post so that folks able to access the Internet, whether in Isle of Man, Belarus or Palestine, can find my Livingly Dying blog.
There have been 33,160 visits to the site and while 27,144 originated from within the United States, 6,019 came from another 101 countries.
I like to think the blog lessened other people’s isolation with disease. This blog certainly reduced my isolation. Thank you for the comments, insights and support. I also hope the blog championed the possibilities of clinical trials and immunology even as it offered an overly realistic glimpse at challenges of trial participation that required significant travel.
A year ago, paperwork was just signed making me officially in the trial. I awaited my Apherisis on May 22nd to gather the dendritic cells to combine with my harvested tumor for the kickoff vaccines the first week of June. The year was filled with the predictable highs and lows of a terminal cancer patient choosing an ambitious Hail Mary pass.
This week I officially enter an observation phase. It has already been two months since my last treatment and the deleterious effects of the drugs are waning. My ca-125 continues to rise and is now at its highest point since frontline treatment. What should trigger concern means less because I am an immunological experiment – and science is beginning to see that patients undergoing immunology don’t always have a steady or fast path towards cancer stability. Rather, my body might be learning, which is good, and part of that learning is mastering the skill of recognizing and then eliminating cancer as happens in a healthy body. For those who love to understand, watch this scientist-to-scientist video explaining the emerging breakthroughs of immunotherapy http://www.scientificamerican.com/article/wolchok-video-who-knew-cancer-has-an-off-switch-video/
I will not be retested for months – a thrilling release to enjoy my first break from treatment since I started this journey with metastatic cancer four years ago.
I intend year two of the Livingly Dying blog to focus on rebuilding and thriving as I work to extend my own break from treatment with expanded efforts in self-healing. If you have your own thoughts for what you would like to see more of on this site, please share.
One year! I’d love to hear about the small ways you find to express gratitude. I forget and remember with equal frequency just how grateful I am to still be here.
Let’s hope your body is as intelligent as you are and quickly learns how to fight any new cancer cells! Keeping you in my thoughts, always.
Hi Marcy! So glad to see you’re in your second year of blogging. That’s a very good thing after a Stage IV diagnosis! Also, congrats on making it this far in the trial and your first real break. I thought you might be interested in seeing this article if you haven’t seen it already. Very interesting! Take care and keep on keeping on! http://www.propublica.org/article/where-are-the-low-cost-cancer-treatments
I’m reading along with you every post, silently cheering to myself every time I see you’re that much closer to passing the 5 year mark! Good for you!
I am so happy you did start blogging. I’m sitting over here cheering you on.
I am glad to have found your site. Blogging has helped me to cope and it seems to have a positive effect on you as well. Keep it up, you have much to teach your followers about cancer and life!
Thank you for your insight!
Hi Marcy….you continue, with what has been given you, to serve others. As usual you have my unfettered love and respect.
Also,re: gratitude. Knowing that the natural world abhors a vacuum,MIT is my experience that when I consciously grow the place of internal gratitude, that the big Unversal power rushes in and gills that vacuum I have created, with even more to be grateful for.
Knowing a bit about done of your astonishing journey, and knowing you, is one if the gifts my ” place of gratitude has given me. I thank you for that…..keep up the good work, Marcy! xoxoxo.
Oh my dear friend! What a pip you are, Toots! xxx
appreciate your writing Marcy. forthright and sensitive. not sure what else i want to see here. I hope you make the most of the break from the trials. what colour/s do you enjoy / feel drawn to?
i am earth tones but bright. Am currently working on a quilt that breaks the rules in having a center that is very earth tones and dull and the outer edges are all bright jewel tones. I love the combination. But, there is little I dislike.
Marcy Westerling http://livinglydying.com/
Enjoy your respite from trekking to Philly and testing, etc! I’m so happy for you!
Marcy, you continue to amaze me with your fortitude and determination. You are such an inspiration and I am so blessed to know you. I am so happy for you Marcy and pray that you continue to enjoy your time off.
Bravo, Marcy! For surviving, thriving and sharing your journey.
I found your blog via a comment you left on “regrounding”. I started reading it from last October to this latest entry. I am awed, utterly amazed, and humbled by all you have been through. I am a recent widow just over a year out from the death of my husband who had multiple myeloma and died next to me, peacefully, in his sleep, from a small but lethal undetected brain tumor – a secondary cancer that can sometimes develop after having the tandem auto stem cell transplants my husband had previously. when he died, we were both in a very robust remission ( was dx’d with ST IV metastatic breast cancer in 2012 and was deemed NED post treatment). 8 weeks after my husband’s sudden and traumatic death, I was dx’d with yet another cancer, ST III uterine with mets to the cervix, that had no connection to the breast cancer tumors. I completed treatment late this past winter. I will have a scan in mid-june. licking the wounds of now being alone without my Beloved by my side, I found cancer fading into a paler shade. I was a hospice nurse for 30 years before my husband was diagnosed (his femur snapped in half and he collapsed in a restaurant parking lot after celebrating our 42nd wedding anniversary) and I became his sole full-time CG. I have breathed, lived, paid witness, and became a full time cancer patient, and for the most part, have lost the memory of what life “before” was really like. thus, knowing I have two “incurable but treatable” cancers while slogging through the unspeakable grief of widowhood, I was drawn in by the title of your blog, “livingly dying”. there is something here, something I cannot name, something that whispers and infuses me with…again…I cannot name it. yet. it has something to do with thoughts of simply walking away from further treatment if the upcoming scan shows even the beginnings of recurrence of either of the 2 cancers. now I feel a shift that wants to pull me in another direction – it’s barely perceptible, but it’s there. I feel a connection of sorts – surely to your words of struggle, surely to your words that express such determination that seems to coincide with what I have always used to cope – a will of iron, along with an eternal sense of optimism, surely to your expressions of your ability to get outside of yourself, to mindfully exercise feeling gratitude, and to grasp onto hopefulness, and even more surely beating down the doors of much of the standards of care, too worn and weary and out of sync in this 21st century that has produced little in treatment that is neither palatable, nor effective for too many decades. and your writing, your research, your advocacy your straight-out authenticity, that authenticity I am struggling mightily to recapture when in all the aftermath of these many years, eludes me – I do not know who I am anymore, but I am fiercely determined not to be defined by cancer, nor widowhood. I wish I knew what thoughts are brewing, just below the surface, I wish I could tell you exactly what reading your story (I plan to read it in it’s entirety asap) has meant to me thus far. but I do think it’s something good. I grapple most with the challenge of the re-shaping of my life, (while desperately wanting my old life back, dammit), and how I can live dying as I deal with so much piling on in a relatively short period of time, grieving the losses of both my Beloved, and those that come in the aftermath of active treatment. perhaps the shift I feel has to do with how to evolve and understand and believe and absorb the truth that only when we are fully broken do we understand and appreciate life – like the picture we sometimes see of a beautiful flower thriving and turning it’s face to the sun as it emerges through a chink of hard concrete. I am fully broken. I want to be that flower. I just can’t find a way to plant my seed into that chink of concrete. so I will continue to read and re-read (I am fairly research paper savvy and so appreciate the links you have provided), and see what happens, what a whisper or perhaps a thunderboltish awakening might provide me with some measure of clarity. meanwhile, please know I am thinking of you and that I believe there was a true meant-to-be-ness in finding you and your story, Marcy. I am sending you waves and waves of warm hugs and big hope – I hope you can FEEL them!
Thank you so much for sharing so much of your own struggle. I can feel it, understand it, appreciate it. I have confidence that you are already rebirthing. What a joy in a world full of struggle to remember the power we do have! let’s stay in touch! Xoxo