Saturday, September 5, 2020

Would You Rather...

There is a party game wherein one is asked a question beginning with “Would you rather….?”   The person asking the question will pose two options, generally on the farthest of each side of the choice spectrum or perhaps posing two unwanted choices.  For example: 

·         “Would you rather ride bareback on a beach in Cancun or do 5 laps around an Indy Car track?”  

·         “Would you rather be the tallest person in the world or the shortest?” 

·         “Would you rather live without sight or without sound?” (an example of two unwanted choices)

The person being asked the question will share his response and his reasoning as to why he thinks it better to be “taller” or “shorter.”  Others then chime in with comments or with their preferences and reasoning.  It’s a fun way to get to know others and often provides insight into how people see their world, both in the question itself and the answer.  At the very least, it’s good for a few laughs.

One of the questions invariably asked in such a game is, “Would you rather know the timeframe of your death, having time to prepare yourself and loved ones, but know it is looming…or…would you rather death come quickly and with no notice, no time to prepare, and no foreknowledge that it is coming?” 

It’s tough question, to be sure, but whenever asked that question, my answer has always been, “I would rather know.”  

People with late stage cancers, with recurrent and incurable cancers, face questions like these every day. Whether posed by our medical teams, by caregivers or self-imposed, they are serious and difficult questions.  Answers require introspection, deep and authentic discussions with loved ones, a willingness to go to the core of your being and to assess your life’s goals and purpose.  Answers to these Would You Rather questions have real impact on the length and quality of life.

·         Would you rather die at home or in Hospice/Hospital?

·         Would you rather have high levels of pain and full clarity and presence or would you rather have no pain with limited clarity and presence?

·         Would you rather take treatment and be “less than” yourself, sick and experiencing side effects for months if it buys you extra time at the end or would you rather skip treatment, die sooner but be healthier and more present for a longer period in the near term?

Leaning into a recurrence, which ensures my cancer is terminal, I now have a very important, “would you rather…” to consider.  Do I take treatment now – and risk ill health in the short term (and in a pandemic), risk being “less than” I am today due to the side effects of treatment, risk living the rest of my life in a slow decline of capabilities and energy … or do I postpone/deny treatment and live as long as possible in my current state only to face a more sudden and steep decline when the time is near?

I’d rather not have to make that decision at all and yet I must.  Fortunately I’ve played this game with myself over and over these past few years while anticipating a recurrence and have a sense of what I will do.  When the decision is made, I’ll let you know.   

Thursday, January 2, 2020

2020 Resolutions: Be Patient, Peaceful and Present

It has been my habit to set a few select New Year’s resolution each and every year since I was five or maybe six. They have varied between the mundane (lose weight, save more money, etc.) and the interesting (say yes to every new opportunity) and most years, I keep them – if not for some of the year then for all.  This year, I struggled a bit when examining my life and trying to determine what new goals I might set for myself.  Some, like “lose weight” seem so inconsequential anymore – not because I couldn’t stand to lose some weight (never did quite master that aspect of life – ha, ha) – but because I have cancer and having cancer changes your perspective on everything.  What I weigh no longer takes up an iota of my mental space – there are so many more meaningful things to focus upon….

But what?  What, in light of my current status, do I want to change as I move forward in life? It took me some time and a good deal of self-exploration, but I’ve landed on the following (it took longer to explain than planned – sorry for another long post!):

Patience: the quality of being patient, as the bearing of provocation, annoyance, misfortune, or pain, without complaint, loss of temper, irritation, or the like. (2) an ability or willingness to suppress restlessness or annoyance when confronted with delay (3) to have patience with a slow learner (4) quiet, steady perseverance; even-tempered care; diligence: to work with patience. 

Having cancer affects you both in deep/meaningful ways as well as in small/subtle ways. It impacts you physically as well as emotionally. The way in which you walk through the world changes, even if just slightly. People respond to you differently once they know what you are going through/have gone through and thus even long-standing relationships are inexorably changed. 

 Adjusting to the new reality takes time and patience. I have never been a patient person.  

Everything about my treatment, recovery, and subsequent “re-engagement” with life went too slowly or not as I had planned.  I had little tolerance for things did not go well and that lead to great anxiety and stress.  Whether my impatience has been the result of a desire to be done with the task/treatment at hand as soon as possible or is perhaps based on that sense of fear which underlies any cancer diagnosis, “will I have enough time to heal and return to a normal life?” I don’t know. I just know that being impatient did not aid my healing nor change much of what happens and only made me feel frustrated and as if I had no control over anything. 

Thus, this year, I vow to release all the anxiety that comes with thinking the world should run on my timeline or in a way that I can control and practice patience with whatever comes my way.

Peaceful:  (adj) untroubled by conflict, agitation, or commotion: quiet, tranquil (2) of or relating to a state or time of peace (3) devoid of violence or force.

These past three years have been much too turbulent.  Since 2017 when I was initially diagnosed my life has been full of new experiences, new terminology and a new way of life – none of which I asked for, wanted or ever thought I would experience.   The first year was most chaotic as I was consumed with diagnoses, surgeries, and treatments all the while dealing with the emotions (mine and others’) associated with a late-stage diagnosis.

 The second year was one of healing, which took much longer than anticipated but which did not allow me to return to what I remember as normal.  The difference between the old me and the new presented many challenges.  While healing physically, finding a solid emotional base upon which to stand was difficult and I was often off-balance.  

And now, as I approach my third year post-diagnosis, I am as well as I can be, but I am no less settled.  Thoughts of “when” my recurrence will be official sit in my head all day/every day. Making plans well into the future is difficult as I fear I will be “recurred” then and unable to enjoy whatever vacation or event is in the making.  I hold myself back from any discussion or planning of future events as I do not know with certainty how I will be when the time comes. I am living in fear.

I cannot be fearful and at peace at the same time, and I so want to be at peace…so in 2020, I vow to release the fear and be at peace with whatever happens.

Being Present:  Ah, this one is more difficult to define and experience. It is the power, the beauty and the meaning of now and it is all any of us really have. To being present is to be fully engaged, involved, and attentive to what is happening with your body, mind, and heart.  To be present is to live fully, to give to others freely and wholly and to receive openly and lovingly.  

I cannot say where I’ve been these past few years, but I can say that seldom was I fully present in any given situation.  Always, questions about “what’s next?” took me out of whatever I was doing to a place in the future – a place I thought I needed to start managing today despite not being certain exactly where I’ll end up.   I had to think about how one thing might impact another and whose future challenges I needed to manage now, before they became an issue…and I had to think about when my next test/appointment was and whether or not “this time” would be the time they delivered bad news. 

I spent a lot of time in the past as well, wondering how this came about and whether or not it was something I did that allowed the cancer to form and grow in my body.  Could I have been diagnosed earlier had I pushed harder or not waited so long?  Did my diet or lifestyle contribute?  Was I being punished for some awful deed I must have committed years ago and if so, which one?  Always…I was “somewhere else” in my head.

Don’t get me wrong…I was involved with people and enjoyed their company and the events we attended etc. but not fully.  A word or a shared experience could take me from the present to the future in an instant and I would linger there for as long as the thought would last, returning to the experience a little less focused and not fully engaged. I felt disconnected to the present and unattached to the future and have thus been floating in a sort of cancer purgatory for far too long.

I want to be part of life again – fully engaged and fully present.  I want to experience the now as it occurs and spend my time (physical and emotional) with the people I love and doing the things I love.  Cancer has taken enough from me, I will not let it take my “now.”  

So, in 2020 I vow to be present – to let go of the need to examine and plan for every aspect of the future or to search my past for clues and reason.  I’ll take my chances with whatever comes next knowing I have lived what time I have remaining fully present for every moment.  

For it is only in this moment we live and today, I am alive. 

Wishing you all a healthy, happy and progression-free New Year.  May it be our best yet.

Monday, December 9, 2019

Uncle Jack and Lady Cancer

While at a family gathering this weekend, my dear Uncle Jack was explaining my “illness” to a new friend, another elderly gentlemen, and I overheard him saying, “It’s just Lady Cancer.” His friend nodded as if he fully understood what “Lady Cancer” was and then they both looked at me - with a mixture of pity and of what I can only describe as casual dismissal.

I was, surprisingly, instantly angered by his statement. But why?  The pity I understood. Unwelcomed as it is, I get it a lot when people learn my story.  The sense of it being perceived as unimportant and the very strong feeling of casual dismissal (triggered by the word “just?”) was something new to me, something more tangible and something very objectionable.

I wanted to approach them both and ask them what they meant by "Lady Cancer" and more so, what was meant by the look they threw me. Instead, I stepped away to examine why I suddenly and very strongly felt as I did and who or what exactly was the source of my anger. (I learned long ago to pause and evaluate and not let my emotional reaction flow freely from my mouth….)

Uncle Jack and I have a good relationship and I am sure he meant no harm. He is of a prior generation (and I’m no spring chicken); perhaps he was simply uncomfortable with words like Ovarian, Endometrial or even Gynecological.  His new friend was also of similar age and perhaps sharing any more detail would be considered indelicate. I am OK with that, if that was all  it was – but as I sat with it, I realized that that is NOT what it was. 

It was not a struggle with the words needed to describe the female anatomy, it was not the topic of cancer and it was not that I was there in the room though not in the conversation when this was being discussed – it was more than manners.  It felt as if they had lessened the impact of my cancer by calling it “just Lady Cancer” – as if somewhere between them, there was an understanding that “Lady Cancer” was not a serious form of cancer - that it was somehow more delicate, more fragile, less devastating, less frightening, or somehow less impactful.  It was as if, because it happens to women it is somehow not to be taken as seriously as if it were any other kind of cancer.

I got angry again  and wanted to rush back into the room and say, " D#@n Right it’s Lady Cancer – she is fierce, relentless, determined, clever, strong-willed and seemingly indefatigable.  She is also strategic and stealthy as she builds her strength, bold when discovered and often, when defeated, she does not completely retreat but instead lays undetected – for months or even years until she has regained her strength, until she is ready to come back into the light.  “Lady Cancer” is smart – so smart that she has evaded all efforts toward her elimination or her impact on a woman’s life, despite millions of dollars being spent toward a better treatment and/or cure. She persists – because she is Lady Cancer.

Knowing that I have “Lady Cancer,” Dear Uncle Jack, should scare you just as much as, if not more, than any other type of cancer. The detection of this cancer is often in late stages as there are no/few early symptoms or detectable signs. The treatment for this cancer is brutal – surgery followed by extensive and long chemotherapy.  It leaves one scarred, weak and forever impacted.  It scares you – not only at the time of diagnosis, but most every day thereafter.  It takes much and continues to take from you for years, eating away at your well-being, threatening your future and recurring with alarming frequency.  Despite all scientific, religious and human efforts, the death rate from this cancer is among the highest of female cancers and the world is making few impactful strides in the effort to extend life and eventually to cure the world of this disease.  This “Lady Cancer” as you put it is deadly.  She must be stopped."  

Of course, I wanted to say, that but didn’t ... for a whole host of reasons including that I might be wrongly interpreting his comment.  Had I started down that path however, I would have had to continue...

"Despite this “Lady Cancer” being such a vile, destructive, strong and persistent disease, Uncle Jack, please do not forget that I too am a Lady  – and let it be known that I too am fierce, relentless, clever, strong-willed and seemingly indefatigable.  I, too, am strategic and stealthy, bold and persistent, smart and resourceful…but unlike Ms. Cancer, I am not alone on this journey.  I have the strength of others – so many others, male and female alike – in family, friendship, professional services and advocates and in those who walked before me, those who walk with me and those who will walk after me. Together, and with much effort and resolve, we can defeat Lady Cancer and one day we will."   (And then I would have hit him up for a donation to the Cancer Center - LOL - how could he refuse then, right?)

I have forgiven Uncle Jack his use of words . Still, the feeling of dismissal lingers and I will share those feelings with him when next I see him (calmly!).  That said, I hope that no one else ever feels dismissed, or lessened or not heard when it comes to Ovarian Cancer (and all other forms of female gynecological cancers).  And I hope that if you do, you are braver than I and address it directly.  I know “this lady” will!

Tuesday, April 23, 2019

I miss the woman I used to be.

I had a tough day today and during one especially challenging episode, as I was melting down and feeling helpless to make the changes necessary, I felt a deep longing for the woman I used to be…you know, before cancer.  
She was strong and capable and always knew what to do.  She was spontaneous and lusted for adventure.  She was healthy, vivacious and always had a good word for others.  She’d try anything (reasonable), do what others could not and had the energy of a 40 year old.  (She was not the least bit vain – ha, ha) and she could deal with my day so much better than I am dealing with it.

I am no longer that woman…and I miss her. 

I am well aware that, for reasons not under my control, I am not the same as I was.  As a result of my cancer and subsequent treatments, I have physical limitations that prevent me from doing what I used to do.  I am not as capable as I once was.  I can no longer “do anything," my get up and go got up and went and, get the drift.   

I know there are aspects of the “old me” that remain and that I may be too kind in the memory of  my former self, remembering her at her best and not at her "everyday."   I realize too that I retain some of who I was.  What remains is hopefully the "best of" me and I can rely on those aspects to compel me forward to continue on my journey. 
Still, I miss the pre-cancer me.  
 I know too that this journey I am on will continue to change me in profound and yet unimagined ways – some for the better and perhaps some for the worse.  I can look forward with curiosity and excitement to discovering new aspects of myself as I continue to adjust to my new reality and eventually, I hope I can eventually  embrace the me I am becoming. 

Friday, December 28, 2018

Dear 2019, Please be kind

Christmas is over, family has returned to their lives in faraway places, the tree is down and holiday decorations put away for another time.  Life, as they say, can return to normal.
The problem is I no longer know what “normal” is.   After a cancer diagnosis, surgery, and chemotherapy little in my life is as it was prior to diagnosis.  My body is different -  scarred and weaker, no longer able to tolerate certain activities nor to move as freely as before.  My mind wanders into places it never dared to go and holds both fear and hope in equal measure where before fear had no place.  My spirit has been challenged and I have questioned much of what I thought to be true. 
2017 was the year I fought for my life.  Surgery and chemotherapy took a great toll on my physical and spiritual being.  2018 was a year of recovery, my focus on healing.  It took the entire year to rebuild my physical strength, to find a mental space where I can live with and even embrace the uncertainty, to get back out into the world and yes, to grow my hair into a style that looks like someone other than my oncologist cut it.
It is time for a new beginning.
So, tonight I close my eyes to old ends and open my heart to new beginnings.  All I ask, dear 2019, is to please, be kind.

Wednesday, June 6, 2018

A Porcupine in a Balloon Factory

It has been almost six month since my last chemotherapy treatment.  My two post-chemo follow ups have been positive with a steady CA125 and no evidence of disease.  I remain in remission. One would think that I would be relieved and that the ever present cancer consciousness would begin to fade, if only slightly.

Instead, I feel much like a porcupine who finds herself trapped in a balloon factory, afraid to move for fear of a balloon falling, landing on a quill, and popping exposing me to the dangers of what comes next. Every new abdominal/back ache and pain is a falling balloon.  Every bout of exhaustion another balloon. Each new lump or bump yet another balloon and every blood test a potential “Pop!”  I would very much like to run from this balloon factory – through the doors and into the sunlight without ever looking back – but I cannot run.

The best I can do is to make my way, so very slowly, three months at a time for the next two years (and then at a slightly more accelerated pace), until five years from now when I can once again roam free. Though the thought of being trapped in the balloon factory will no doubt remain with me for the rest of my days, I hope never again to see another balloon.

Tuesday, October 10, 2017

Chemotherapy Complete!

The last six weeks of chemo were brutally different from the first twelve. During the first twelve weeks I had energy and was able to do much of what I used to do. With the exception of chemo day and maybe the day or two after my double infusions (where steroidal rage became a laughable problem for me and those around me!) I was able to do mostly what I wanted to do.  In the last six weeks, due to the build-up of toxicity and the drop in my blood cell counts, I was able to do little. I was consistently weak and unmercifully fatigued and without sufficient white blood cells, I was hyper-susceptible to viruses just as flu season began. 

As a result and out of an over abundance of caution, we did not get out much. When we did, I was not able to participate as I would have liked. My physical capabilities were diminished such that I felt like an extremely old and unwell soul.  I could not even complete daily tasks (like doing dishes or washing laundry) without having to stop and rest.  I could not make a trip to the pharmacy to pick up needed drugs as I could not walk from the car to the entrance without support.  Even going up the stairs at night was taxing, requiring me to rest half-way up and again once I got to the second floor.

It was frustrating, limiting and mentally debilitating.  After a time, my mind and spirit also grew weak. I no longer felt like I could continue to take the cancer-weakening drugs into  my body and was concerned I would not make it through my final six weeks of treatment.  I even considered phoning my GYN/ONC and telling her I was done with chemo...I was ready to quit.

 But I've never been much of a quitter so I  did not quit. I made it through the 18 treatments and chemotherapy is now over (and never to be repeated).

I should be jumping with joy and be elated at the prospect of regaining my energy (required for jumping), my color (I am officially the palest white person I know) and my hair (now that the summer is over, being bald has become a matter of finding heavier hats/scarves to use as a covering...can't say I've ever experienced a 20 mph wind on a cold day without any hair....Brrrrrr!!!!).   
Those who have gone on this little adventure with me are certainly happy - my husband is happy that I'm no longer under the influence of so many poisonous drugs, that I'm no longer Dr. Jekyll and Ms. Hyde for a few days every week and that I already seem to have a little "pep" back in my step.  My sister is happy and noted that my color is already better and that I seem like my old self again...and so on.  The best possible feeling I can muster about it all at the moment however is relief.

I am relieved at not having to have a blood draw every Tuesday.  I am relieved at not having to spend 4-6 hours in chemo every week.  I am relieved not to have to take steroids, or anti-emetics or any one of the other dozen or so pills I had to manage my chemo toxicities/side effects. I am relieved to know my energy will (eventually) return as will the feeling in my leg and foot.  I am relieved to know that my hair will soon start to regrow, etc.  

I am only relieved however, I am not yet even happy.  There are still too many things that are likely to go wrong to give myself permission to be happy...
  • 80% of women who are diagnosed with advanced ovarian cancer and are subsequently treated will experience remission after 1st line treatment - hopefully that will be me. 
  • Of those who go into remission - 75-90% will experience a recurrence within 2 years.  Once a recurrence is experienced, ovarian cancer is considered non-curable.  Further treatments are palliative only.  (Though I hope that is not me, probability says otherwise.)
  • 50% of women who experience recurrence will live less than an additional  24 months (not nearly long enough)
  • Most women who are diagnosed with late stage ovarian cancer die of ovarian cancer

...and the fall from happy is a much greater fall from the space we have reserved, called relief.

Happy may bloom on the day I hear "You are officially free of disease."  Then, and only then, I'll allow myself some time to be cautiously and temporarily happy.

In just a few weeks' time, I will follow up with a CT scan and another CA-125 test.   The results of those will show whether or not the surgery/ chemotherapy alleviated the disease. I will provide an update after we know more.

Would You Rather...

There is a party game wherein one is asked a question beginning with “Would you rather….?”   The person asking the question will pose two op...