All things come to an end..

My “sabbatical” has ended, it has now become full fledged retirement.  Today is a particularly poignant day for me to say my farewells to all of you. It has been exactly five years since my husband PC died. I have tried to document his transplant journey for those of you who might find it interesting or helpful in your own future travels.

Several months ago I read a book titled “Year of magical thinking”. Some of it hit very close to home. The author writes about her husband’s death. For one year she could not accept the reality of it, had this sneaky hope that it will all go away and magically he will be alive again, if only she held it all together somehow.

I know what she is talking about. I indulged in magical thinking for almost 5 years – I guess I am a little “slow” that way. I was (am??) still doing triage and CPR on a guy dead for 5 years. That was the reason why this very hard headed scientist / rationalist just could not bring herself to read the one particular document that is still un-opened in her files. It still sends me shivering into a blue funk anytime I try to open it – my husband’s autopsy report. The ‘logic’ went like this : if I tried really hard, if I fought the good fight and helped thousands of CLL patients, maybe I can make him un-dead. Maybe I can “pay” for the sin of letting him die. Too bad I could not find anyone “up there” to cut deals with.

DSCN1793His dog Jasper (that is her, alongside ) was the last link I had with that previous life. When she passed away in 2012, it was almost more than I could bear. She was very much his dog, the last real connection I had with PC. My new dog Buddy is very cute and affectionate. But I find myself holding back, not wanting to get sucked into loving another short-lived creature. Then of course I feel guilty about that too!! We create such strange dilemmas for ourselves.

Over the past few months, it has become final acceptance. Grief without hope of magical thinking, saying good-bye for real this time. Sadness and loss, finally without the soul- destroying guilt I have been carrying around, but without hope either of ‘magical’ redemption and waking up from this ‘bad dream’ of CLL. It still sucks to be alone when I wake up in the middle of the night. One thought in Didion’s book hit very close to home: I had the smarts, I had the latest information, the intestinal fortitude to make tough calls without dithering, we had money, I knew all the CLL experts on a first name basis, we had gilt-edged insurance – all the advantages. He was so very fit, no secondary health problems. He was happy, he had a lot to live for. He was so young, just 51 at diagnosis!  Death was not an option, we did not even entertain the possibility. Well, death is not an option we can deny for ever. Not for any of us, it is just a matter of when. Not accepting this fundamental truth of all our existence, I drowned in my own arrogance. Funny thing is, now that I am learning humility the hard way and am down on my knees willing to say ‘uncle’, PC is no longer here to accept my apologies or give me absolution.

One of my reasons for walking away from CLL Topics is that I need to get rid of some of this hubris. I could not save PC, with all the desire in the world. How can I hope / pretend to save anyone else? Wistful expectations I can do so and my inevitable failure were not doing me any good. I have taken too many hits over the years, lost too many friends to this awful disease. As logic would dictate, I got to know the worst prognostic cases the most, they were the ones who needed my help more often. So it is not a surprise that I lost more of them than random CLL survival statistics would dictate.

I am not sure I can be of much use anymore as a patient advocate – that job requires a level of optimism and feistiness and I am not sure I can bring either of those qualities to the table anymore. I told you I will always do my best for you – and now that I can no longer  bring my “A game” to the fight, it is time for me to retire.  I think I am done trying to leap tall buildings in a single bound, outrunning speeding bullets or conquering incurable cancers. Time to retire, take my dog for walks, play duplicate bridge and improve my appreciation of very complex Hindustani classical music. Time to hang up my spurs and be a grey haired little old lady.

But please remember that that I care deeply – intensely is a more accurate description – about each and every one of you who chose to communicate with me directly.  It has been my honor and privilege to have served you.  Twelve long years – that is how long I have struggled with CLL; eight of them with PC by my side and four of them by myself. My departure does not mean the websites will be shut down. Our beloved daughter Radha will continue to serve as our webmaster. All three of our website (our flagship website CLL Topics,  more recent Updates site and Harvey’s Journal) will be hosted and maintained, open to all comers, for as long as the content remains relevant. There is a ton of information on these sites. I hope you will continue to visit, learn to search for the articles that are useful to you.

If you are like me, if you find that there are days and nights – especially nights – when it seems CLL has taken away too much of your life and soul, if you had to postpone too many dreams or even give them up for good, if sunlight does not seem bright and warm anymore (it was a beautifully sunny day in Minneapolis, the first day of real summer, the day that he died. I remember watching the kids playing Frisbee as we walked back to the apartment after saying goodbye) it is still important to remember that even this devastatingly miserable disease has its value and lessons we can learn from it. When I look back, the last 8 years of PC’s life were probably the best years he and I had – and that thought gives me a great deal of comfort. Faced with undeniable mortality, we jettisoned useless baggage and found time for each other.

I find myself a little wistful when I meet someone with deep and abiding faith that helps them face loss of loved ones. I do not have that luxury. The best substitute for me is an abiding sense of idealism and sense of community. CLL killed my husband PC. CLL changed me in more ways than I can count. I think I am sadder now, but hopefully kinder than I used to be. I like to think I am a little wiser now, but also much more aware of my own foolishness and arrogance. A kind word, a sincere good wish for someone else, these are worth a whole lot more than self-preening geeky intelligence that I used to value so much.

So, here is what I learned. It is important to take care of yourselves, you have more skin in the game of your life than anyone else. Please let your families and caregivers take care of you, don’t push them away. If you are a caregiver, remember you play a very important role. Doctors don’t know everything, even if they pretend to sometimes, but please remember they too are human and cut them some slack. The best investment you can make is in improving your communication skills, whether it be with a bad tempered and over-worked nurse struggling to get the infusion needle into your arm, or your terrified spouse lying awake next to you on bad nights. Hug your children while you still have a chance to do so.  While there is no proverbial free lunch, once in a while you can get lucky and a new game changing drug becomes available just in time for you!  If there is one tribute that is worth aiming for, it is not whether you won or lost, it is whether you managed to live your life with grace under fire.  It amazes me how very many of you manage to do just that, day in and day out.

My love and best wishes to all of you.  I will never forget you. I will always be grateful for your kindness to me and my family over the years.  Buddy (that is him below) says hi as well.


Buddy at four months