This isn’t going to be all pretty and processed. This isn’t going to be all edited and shiny and polished. It’s going to have TMI, and it’s going to talk about shit, and piss, and genitals and fear and death. And psychotherapy.
And you really don’t have to read this.
It is long, and it is dark.
I just need to write it and release it.
And maybe there are other psychotherapists who may find themselves in a similar position, or who are in this position now. And clients who have been in this position with their therapists who didn’t get a chance to speak about it or to ask questions.
This is where I am setting down my load. It’s a kind of unbelievable set of ludicrous circumstances – and I’m warning you it’s going to evoke some existential anxiety. It’s going to remind you that life is not a safe proposition
So the first thing that happened is that my vagina blew up. Because I’m actually going to refuse to be ashamed about any of this I am naming exactly how this started. My uro-gentital area became inflamed and extremely, unfathomably painful. In a way that makes no sense. I’m an old married lady. Nothing “unusual” had taken place down there in long time.
The gynecologist was stumped. No infection of any kind, viral bacterial or fungal. Nothing she tried or prescribed helped. The pain got worse and worse. And then one Friday night,– I stopped being able to pee. And the pain. So I went to the ER the next day because that was something I had never experienced before in my life – my capacity to eliminate paralyzed – where they told me that I didn’t have a UTI and discharged me with antibiotics because when they tried to discharge me and do nothing at all, I started to cry. I didn’t want antibiotics – but they had to placate me somehow.
And of course my gynecologist was away on jury duty, but I at least reached a nurse who told me that I could soak in warm water, or pour warm water on myself, or maybe just immerse my hand in warm water, and told me what other women who had “vulvodynia” did – women with unexplained, untreatable severe chronic vulva pain, about 15% of all women – and some of the tips she offered helped a little.
So I dangled in vulvodynia-land for about two weeks. In constant, excruciating nerve pain. Like shingles sort of. Nothing relieved it, but some things made it worse and I could at least avoid them while I researched out some solutions and got to an acupuncturist.
But then something stranger happened. Over the course of a day or two the pain and paralysis began moving, spreading on to other areas, my anus, my lower back, and retreating from its initial territory – but whatever the pain left behind was numbed, weakened. And then it began spreading down my right leg, and to my foot. Just before my vagina blew up I had been to the podiatrist for excruciating foot pain. I thought I might need new orthotics.
But now my foot, leg, lower back, and what doctors call my “saddle” – all parts that would make contact with a saddle if I were riding a horse – were numbed, weak. My bladder and bowels were not operating easily or properly. Going to the bathroom became an intentional, complicated and conscious task. Walking was similarly complicated: I couldn’t feel the ground much – it was as if my foot was deeply asleep and hadn’t started to wake up yet. Rubbery. I watched the ground and moved my foot with intention on the way to catch the train for work: Pick it up. Put it down. Pick it up. Put it down.
Getting to the office was a challenge and a relief. I could sit in my shrink chair and not have to think too much about my body, only about other peoples’ lives what was happening to those I loved and cared for.
I got to my primary care doctor. Lyme’s disease? Something structural? My father had many back operations, stenosis, arthritis? Something compressing, herniating in my spine? Back surgery?
He ran some blood and sent me to my neurologist, who I see for migraines.
The neurologist is a nice young man. Handsome. Silly. Sweet. His mother is a social worker/psychotherapist and I can imagine my son growing into a man like him. Available. A little anxious. But kind and full of empathy.
He wasn’t too concerned about my numbness. I couldn’t curl my toes on my right foot but I could feel the safety pin as it tapped my along the thick skin at the bottom of my foot.
But he did send me for an MRI and I cancelled my clients for the day.
And after the first MRI he called back much earlier than I expected. That didn’t seem a good sign. I was on the train to work. I was standing. It was crowded. My back pack was heavy from the big thermos – the office had no warm water and I had to bring my own. There were small white spots in my lumbar region on my spinal cord, he said. We didn’t know enough about them to make any diagnostic determinations – or if it was local. It could be demylenation (Multiple Sclerosis) granularization, (Sarcoidois) or “something else.”
He didn’t say what “something else” was – but I knew.
I dismissed the “something else” as practically impossible – because I’d had such good blood work with my Gyn and my GP. Perfect. Excellent white blood cell count. No sign of “something else.” He was re-running the blood work, and I was pretty sure that he hadn’t seen my first tests. That was probably why.
We needed another MRI. We were going to need many more tests most likely. This was now moving fast, and starting to get disruptive.
I sent a Bcc email to all the clients on my caseload: I described the symptoms I had been experiencing – pain followed by numbness “below my waist and through my leg and foot” I told them that a long diagnostic process involving many more tests was going to become disruptive to my schedule – and that I would have to send out group blasts in order to keep people up to date on the days I would be in and out of the office.
I also tried to sound grown up and reassuring and realistic:
The neurologist has encouraged me not to worry about end outcomes when we are at the early/middle of what is likely to be a long diagnostic process. It could be many things and many of them manageable. I think this is excellent advice and I am trying to adhere to it.
I’m sorry this is so disruptive. Please expect to meet for our regularly scheduled appointments unless you hear otherwise from me.
It is likely that I will be reducing my schedule by compressing it somewhat in the next few weeks, but that should only involve rearranging a few appointment times.
I won’t be taking on any new clients for the time being.
I will send out group updates as I have new information – and hope you will feel free to share with me any concerns this activates.
I am comfortable and in good spirits – glad that whatever this turns out to be we seem to have caught it very early.
Somewhere around here Trump was elected.
My work sessions were now filled with fear. Fear about the world, fear for their lives, the ongoing legality of their marriages, fear for friends and chosen family who are Muslim, who are immigrants – documented and undocumented. Fear in response to hate crimes. Fear about whether I could remain a consistent support in their lives.
Fear for me.
Fear about me.
Fear of me.
I reached for the words that people were scared to speak. Words like death, and die, and disability and abandonment. I tried to make room for everyone’s experience about what was happening to me, to us, to our work.
I chose to be transparent, and answer questions honestly and factually. We talked almost in the exact same way about our fears about the state of the world and what the future held for everyone.
There are many therapists that would say this was all wrong. That this is “self-revealing” and poor boundaries, proof that I am insufficiently analyzed.
I decided that this was Life.
And that illness and dark times are a natural part of life – and I decided that like it or not – this meant that I had to teach the people who came to see me something about how to face illness and darkness and accept it as natural and expectable. To demonstrate that one can remain psychologically and emotionally intact – empathic – even in the face of illness.
I set one limit, with all clients who were in treatment and legitimately contending with rage and anger issues: Angers that I might be able to accept and withstand under normal circumstances, that I could usually be caring and curious about, that might activate my own fight or flight responses that I had learned to sit and wait and sort through to discover the empathic thread – I was now too challenged personally to withstand. That while I had my force field intact I could encounter and work with rage head on. But now that so much energy was being redirected into managing my own fear, and a real threat to my health and functioning, and maybe my survival – that I had no room left for extra adrenaline.
I did something that I never wanted ever have to do: I bound my clients. I made some subjects off-limits.
Rage directed at the universe I would could stay and listen to.
But I could no longer be the space where ancient angers emerged and were survived and withstood and healed. I could no longer dance the corrective ritual steps of healing primal rage inducing injury.
I used to be a reliable container. I was now, suddenly, a cracked one, limited in what I could hold.
This felt like its own kind of loss.
And what was happening in the world around me, in our political environment felt like what was happening inside me.
Time for priorities to be reorganized and expectations to be surrendered. For core values to summoned and to rest upon them and try not to be budged from that spot: To be brave. To be good. To protect others and ourselves. To allow fear and sorrow to rise up and fall away like waves. To stay focused on what is most meaningful and essential about life and living and nothing else.
After the second MRI of my neck and brain, the neurologist called instantly, which indicated to me that he was not only caring but alarmed. I was still wonky on the Valium had taken so as not to have a panic attack while my head was locked in a vice and stuck inside a big loud can. These same spots, the lesions were present in my cervical spine – which meant through out my entire spinal cord. And I imagine in my brain too – although he didn’t say. I could already tell it was hard for him to consider and deliver bad news. I pressured him to tell me the range of possibilities:
“You’ve asked a scary question and so you deserve the scary answer,” he said:
“Demylenation, granularzation, and cancer – all of them are about equal possibilities. There is no hierarchy of probability among them.”
I would need a spinal tap.
I reviewed my dreams over the past three months starting well before symptoms emerged:
I am storing up gold bars and large bills. I am preparing to be killed. The money and gold are to take care of David and the kids after I am gone. I am running against Donald Trump and I am not afraid of him in the slightest. I see him for what he is and can name it out loud. He leaves me taunting phone messages which seem stupid and childish to me. I plan to annihilate him with the truth. I am not scared because I will not be around for long.
A man visits and talks about his skin cancers. He points out one on my forehead and over my left eye –and then tells me that it’s okay to be upset, the upset is the path.
I dream I am naked in the shower and my son called me because someone is knocking at the door. I grab a robe and see through a small window in the door a short woman with dark hair. I open the door and she has a gun aimed straight at me.
I dream my house is on fire but the fireman tells me that it is only the curtains in every room which have been destroyed but they were dust collectors anyway.
I have cancer in this dream: I am going to die but I do what I like. I spend time with my kids. This is all I really want.
I am teaching an old client, that I have just been reunited with on an airplane or a subway. I teach her how to surrender. That surrendering is saying yes to something you do not want. But saying YES anyway.
Dream that I have a plot of earth and have been given Ellie’s deceased body, wrapped in straw, from head to toe like a shroud. I decide to make it into something beautiful – I plant flowers and dig a sculpture into and out of the earth. I lay Ellie’s body along the top edge of the plot and bury her. Packing in the cool, sandy earth all around her. And I make sure that the packed earth retains her shape. And plant purple flowers with feathery leaves where her hair would be. I finish and it is beautiful. A garden with a visiting spot and space for her that is her and of her and earth and straw and filled with seeds which will bloom in the spring into beautiful flowers. And I’m proud of it but I say: I am never going to do that again. That was the hardest thing I’ve ever done.
I dream that my office and everything is destroyed in an earthquake. Reduced to rubble. Not just my office but also all our support services. A friend comes and we venture out past the epicenter of the earthquake, beyond my old neighborhood, and I begin to find resources to start a new life.
The night before the spinal tap:
A dream that my fingers twitch uncontrollably and I know it is a sign of a serious disease in my central nervous system.
I write my psychotherapist who I have known now for thirty years because I can’t get into the city easily and because I am scared. And he writes back that he is in complete denial and will break something, truly, if it turns out that I am ill.
And I don’t know why but this makes me laugh and laugh until tears stream down my face and also feel loved. And I know once he has metabolized this that he will be there for me. And I just hope he doesn’t break anything too expensive.
The night before my husband and I go to the doctor’s office to hear the result of the spinal tap:
I dream that I have brain cancer.
And I distill the results that we receive from the neurologist into a few emails: One for friends and family, one for colleagues, and this one for clients:
This past Tuesday I had a spinal tap which revealed a strong likelihood of a rare form of chronic, low grade leukemia – called CLL – which is presenting in an unusual manner – along my nervous system rather than my blood.
This is a rare and confusing occurrence- in its normal form: CLL is a “watch and wait” cancer – something like prostate cancer can be – and is usually treated/kept at bay with long term steroids –
But since this is a leukemia that has not presented in my blood work at all – (my blood work is perfect- which is obviously unusual for blood cancer) – its a bit like prostate cancer showing up in the brain and no where else – its jumped its track – and isn’t in its own lane –
Most people with regular CLL present in their blood live with it as a chronic condition.
Because I have a strange form they don’t really know much about its course or what to expect. It’s not showing up in “normal” ways so a clear prognosis is impossible.
We are proceeding to an oncologist who specializes in rare versions of CLL and who will be more able to confirm this peculiar diagnosis – and who is “excited” to see me.
I am unfortunately: an “interesting case” and no one can say yet much for sure other than that there are many treatments for CLL in its normal forms – and several newer successful treatments chemotherapies coupled with newer personalized biological agents, for rare presentations like mine.
It seems, at this point, to be considered treatable – although probably not at all in the way that “normal” CLL is.
I am quite comfortable. I have no pain. My symptoms have been actually improving which is also confusing for the doctors – I am grocery shopping, walking the dog, exercising gently, folding laundry etc.
I will be in the office whenever my doctor’s appointments and energies permit
I want to say one important thing: You are not required to go through this with me. You also have needs: for security, for consistency that I may not be able to provide through this uncertain time. It may not make sense to you to be paying for psychotherapy that has in and of itself become a source of stress. Please know that if you feel you need a referral to another therapist – I will understand and support you and connect you to a clinician I trust and who will understand the effect this may be having on you.
Otherwise: I will be functioning as a therapist as I can, to the best of my ability through this – whenever I can – because this work is important to me, and because I believe in it, and it is healthy for me to invest in what I believe in.
(I include some information about scheduling oncology and testing appointments, scheduling and rescheduling)
I am okay. I have been through this with many loved ones and with many clients. I have had many amazing role models at how to face cancer. I’ve lived here vicariously and now I am here myself. I am not lost. I’m oriented. I have accompanied many people through this process and that gives me a great gift of knowing exactly where I am, it gives me solid ground to stand upon.
There are things I leave out: that the kind neurologist’s eyes welled up telling me. That he had made a plan for the oncologist to see me the same day in case I was deteriorating rapidly – which I suppose – means that I could. That although he focused a fair amount about how CLL is chronic and managed in its regular form, he said it is “not good” that it is in my central nervous system – and he said nothing at all, positive or negative about the images of my brain and whether or not these lesions were present there.
And also I contact my closer colleagues and clinical collaborators – to see who has openings, who can take low fee clients, who might be willing to take on helping me reassign my clients in case I need to engage quickly in treatments that are incapacitating, and to see who could offer support to clients who need more consistency at this time than I can provide, or who will need support because of their concern and reliance upon me. And they rally and tell me they will be glad to support my caseload, or get them to support and they all use the word “temporarily” pointedly
And sweet notes from clients: who send love and encouragement and any kind of care they can offer. And many clients reassure me that they want to stay and that they can and will or feel they must wait, and will meet with me whenever I am available. And I encourage many of them to at least find supplemental support in some form over the next several weeks until we understand what is coming next.
When you take up this profession: you must remain always cognizant of the position that you hold in your self created community. This is an ethical requirement. This is one of those values and priorities that get you through dark times: Do the right thing
When I face out into the world I feel prepared and intact.
When I face my children, who watched their every-day grandmother die in front of them, who watched Ellie, their beloved auntie die away – who lost half of their primary caretaking team over six ferocious months – I am brave for them – but inside I panic and tremble. The thought of compounding their losses is intolerable. I am now a source of terror and trauma. They don’t know anything about cancer except that two rare cancers have killed two of the most important people in their universe.
And now I have a rare one too. But it is treatable we tell them as the doctor said to us. But we heard that same word about Ellie’s lymphoma and my mother’s breast cancer too and placed all our hopes on that one word. We now know that the word treatable does not mean survivable. We cannot trust that word even if other’s need to. We’ve ridden the cancer rollercoaster. We have been on it continuously now for three years – first caring for my mother, then Ellie, and just a few months to breathe through our grief before we are back on the ride. And I am in the front car this time.
We told them calmly and frankly – as they are both too old and too perceptive to be lied to. And that is the most intense conversation I have ever had as a mother, so far. This is radical parenting: trying to decide what is the most loving thing to offer them, and the most empowering thing – when my first impulse is to run somewhere and hide from them entirely until it is all over and I come home one way or another. But I can’t abandon them or insulate them from trauma or even cumulative trauma. I can only model for them how to commit to love and courage in the face of fear.
And I cannot separate this diagnosis from our bereavement any better than my children can. Last November, on this date, Ellie was sitting here on my end of our couch, reading a graphic novel, with my daughter sitting on the other side, their feet tangled together just as our feet and slippers are entwined under the blanket we are sharing right now.
The leaves were turning and we all wore sweatshirts and we napped when Ellie napped and took short walks together to the dog run and rested on a bench before heading back – just as we have been doing together this weekend. And she was gone by New Years Day.
And the chair my husband is sitting in right now we purchased on the day my mother died in hospice last summer, when moments after her death I was possessed by an irrational need to go to IKEA.
It is significant psychological labor to identify with the dead, to miss them, to feel them close, to mourn them, to need them desperately, and now to be in the position they were in – without assuming that my fate will be the same as theirs.
More information about treatment and prognosis in the weeks ahead. But I’m sticking with these prescriptions for now:
Surrender means saying YES even to things you do not like.
And remembering that the upset is the path.
And not to hide behind the curtains but let them burn away.
And to be with my children.
And to annihilate fear and evil with the truth.
And to search for resources beyond the rubble.
And terrible losses can be transformed, with great labor, into beautiful flowering gardens.
An update for those concerned:
Some good news, some news of challenge, some weird news all tangled up together:
Currently I may be the only known case of CLL lymphoma only in the central nervous system and not at all in the blood/lymph. There are other rare cases of central nervous system occurrences but they have always happened to people who already had CLL previously for a long time their blood/lymph. Doctors and researchers are therefore VERY INTERESTED in me. Conferences are happening, and I will of course be presented at Grand Rounds (Fancy!)
Today they took a bone marrow sample to be sure that I didn’t already have CLL in some dormant form, and a spinal tap to make sure that they are able to match my mutation/variation of CLL with the most effective chemotherapy.
All of other cases of central nervous system (CNS) CLL remain “lazy” slow moving cancers that have been very very responsive to a variety of treatments.
My brain is clear of lesions. It appears to be contained in my spine and does not seem to have metastasized on initial examination to any palpable lymphnodes. PET scan tomorrow will confirm this.
It is possible that a recent glaucoma diagnosis I received was actually CLL in my neurooptical region – and they are going to have me examined to clarify that.
I am at one of the top 5 hospitals in the tri-state area. My doctor is a leading expert in CLL, and has treated rare forms before and published on this subject (and will be certainly writing up this case!)
They consider my case an emergency because of where my lesions are – through out my spinal chord – but their concerns are more about paralysis, (or blindness) rather than death.
Treatment is 4 pronged:
1) a chemotherapy such as methotrexate – ( if so it’s likely that I’ll even get to keep my hair.)
This will be a 3 day in-patient infusion process in 2-4 cycles depending on my response. Two weeks in between cycles. I’ll be going into the hospital this week Thurs – Sat.
2) An outpatient infused biological anti-body that targets CLL cells directly that starts on Wedneday –
3) Steroids to address the nerves inflamed by the lesions.
4) A long term oral chemo medication that I will take indefinitely – to keep the CLL suppressed.
So the next few months will be bumpy and erratic and hard – but this seems to be a cancer that can kill me eventually but is unlikely to kill me soon.
They believe we have caught it early enough that I will eventually regain most if not all of my lost function in my damaged and paralyzed nerves.
Hopefully my peculiar case responds as well as the other CNS CLL cases they have seen.
I am mostly very relieved that things are moving quickly, that my brain is clear of disease, and that this is unlikely to be imminently lethal.
(And I am certain to have a few journal articles written about my case – which I kind of want to demand that that name after our Crawford-Amarel family: maybe in honor of Ellie’s nickname for us doctors could inform future patients: “I’m sorry to tell you this, but you have The Crams” )