How do you feel when you walk out your door?

It has been a long time since I've posted here - and today I don't want to talk about Cushing's. I have watched with sadness as the reports come in about the shooting at Fort Hood, and wonder with the rest of the world what would bring a person to the point of committing such an atrocity. The reactions took a dismayingly familiar tone, many people jumping to conclusions and spewing hatred towards Muslims, others trying to moderate that, wait to see, reminding people not to judge all people of a faith because of the actions of this one man. We've been here before, and I won't go into all the arguments around it.

I am not Muslim, but I have friends who are. One dear friend of mine posted on Facebook, "Anybody got my back?" I knew immediately what she meant, but most of her respondents didn't seem to. Unlike most religions, especially Christianity, followers of Islam are very visible - especially women who cover. I think it must be tough to even look middle-eastern in this charged climate. However, regardless of your race or background, if you are a Muslim woman who covers, you are symbolic to many - of whatever their perceptions are of Islam. This friend of mine and I recently traveled great distances to see each other for the first time in years. We met in Tennessee, in a smallish town. We went to an IHOP for breakfast. I was a little bit surprised by the attention we attracted, though I suppose I shouldn't have been. I tend to get treated differently because I am so large, but this was a whole other kind of attention, a different vibe. I often get treated with obvious reserve, even distain, and sometimes outright verbal abuse because of my size. I have learned to not worry about it, deal with it if I need to, and assume that people have their own issues. It's not really about me. Most of the time it doesn't get to me. I have another friend who talked openly (hurray!) with me about how it was for him to go out with me and be aware of the way people who don't know me acted around me in public. It's something I face every time I walk out my front door, it's just a part of life. The thing is, I don't worry that someone is going to be so filled with hate that they might physically attack or try to kill me. I don't worry every time a fat person commits a crime that I will be held responsible for their actions. I told my friend I have her back. I wish I could literally be with her when she walks out her front door. Think of this when you see Muslim women, when you interact with someone with a middle-eastern name, when you hear someone spitting out hateful generalizations. The person who shot so many people at Fort Hood is the one responsible for his actions. Support the people around you who are very aware of the risks they take when they leave the house.

Facing the Future

I don't want to go through another brain surgery.

I saw the neuroendocrinologist today, after a couple of months of waiting for the appointment.  I *had* been very clear up to now that of the two really viable choices before me, I was going to choose to have my adrenals removed.  It meant that I would have Addison's Disease for the rest of my life, but I would still have all my pituitary function, I wouldn't have the risks associated with another pituitary surgery, and it would take care of the Cushing's for good.  Thirty years of this insidious disease is more than enough.  

Surgical consults were not encouraging.  I spoke with two top surgeons here in Seattle, and both of them had very little experience doing bi-lateral adrenalectomies on Cushing's patients, and both of them were grim about what it would involve for me.  Neither of them thought they'd be able to do it laparoscopically, and an open abdominal surgery for someone my size and with my compromised immune system, and Diabetes (because of the Cushing's)... they were not confident at all and said the "baseline risks" were huge.  There was one surgeon in Wisconsin who had done twenty of these - many times more than anyone else had, and all of them laparoscopically, many on patients my size.  I was so encouraged to find him, and then kept hitting brick walls trying to find a way to get the surgery covered out there.  Medicaid said they would do so, but each individual provider (surgeon, pathologist, anesthesiologists, etc.) would have to separately become contractors with the State of Washington Medicaid.  They won't do it.  

So today he said that in light of that, even though a second pituitary surgery has less than a 50% chance of success, he recommends that I take that path.  I am not likely to be able to keep pituitary function this time, which is huge, and for me the grief involved seems impossible to bear.  Among other things, it would mean the end of any chance of having children.  There are the other risks of course, of blindness, brain damage, and the usual surgical risks of - you know, death and all.  Diabetes insipidus is something I've been told is a really difficult thing that sometimes also happens in these surgeries.  There are many things I have learned as I've researched it, and I have been through this once already.  I saw film of the surgeon I will likely have, doing this procedure when I went to the Cushing's Symposium recently.  It's intense. 

I have many fears around this... As a singer, I'm afraid of damage to my vocal chords when I'm intubated.  I'm afraid of the risk of going blind or brain damage.  I'm afraid of the more likely risk that it won't work and it will take another five years of my life watching the tumor come back before tests prove that it has returned and another treatment tried.  I'm afraid of the pain.  I'm afraid of going through this without a significant other this time, no partner to care for me through the surgery and especially afterwards.  I'm afraid of the months and months of withdrawals as my body tries to adjust to lower levels of cortisol.  I'm really afraid of the long, long haul afterwards.  I've been told repeatedly by these doctors that it is going to get much, much worse for a long time before it might get better.  The p.a. who works with the neuroendocrinologist said, "After your surgery people are going to start asking if you're feeling better, but that's just not your path.  You have to be prepared for that."  How?!  I have said that it is as if I have been told that to save my life I have to cut off my left arm or my right hand.  Neither choice is without terrible pain and loss, but there is no other choice but a long and miserable death.  I am overwhelmed.

So I am not being "St. Kathryn of the Tumor", like I joked about last time...  I am not laboring under the kinds of fantasies I had last time, that I was somehow going to gamble and win the medical lottery.  Even if it ends up being a successful surgery, and the tumor does not come back again, I am not going to come back from it like I wish to.  It is a very long and painful road ahead, a continuation of an impossible marathon that feels like a detour from the life I should have had.  This time I am stepping into it with my eyes a bit more open, and I am standing here honest in my fear and pain and unsureness.  I have heard that true courage is when you do things even though you are afraid, so perhaps that is what I have grown to be able to do now.  I don't know how long I can sustain it, but I am not hiding today.  This is the life I have, "should have been" or not.  I am still watching, without much hope, but I am still open to the possibility that somehow this will have meaning, that I can grieve the losses and come out at some point not feeling like my life has been such a sad waste of potential.  There is so much I had wanted to do and be.  

I am grateful for the people who have stepped up and supported me through this long, long journey.  I hope I can someday repay the debt I owe to so many.  Your kindness means more than you could possibly know.  I will need it over the next few months and years.

Twenty Years Later

I keep thinking about Tiananmen Square.   I was nineteen, about to turn twenty.  I remember avidly watching the news daily as events unfolded.  I remember thinking about how my peers the world over were changing everything, and I wanted to be a part of it!  I watched the fall of the Berlin wall (and a friend brought back a piece of it), I watched protests in Russia end the Soviet Union (and heard stories from a friend who helped carry the giant Russian flag to the tanks on which Yeltsin stood), and I watched with amazement and tears and hope as thousands of students peacefully sat in Tiananmen Square and erected at statue they called "The Goddess of Democracy".  I watched in horror and dismay as all their hope, and the hopes of so many across the nation (there were protests in many cities, not just there!) were literally crushed by the tanks that rolled through the crowds on the streets of Beijing.  I watched as the now-iconic images were broadcast of a lone man, the next day, carrying plastic bags of  - groceries?  who knows? - facing down a column of tanks on the wide boulevard that led to the Square.  He amazed me, and amazes me still.  How many people in  history have made such stands?  How many have done so to no fanfare or notice?  How many of us have moments in our life where we make choices whether or not to face the impossible crushers of our dreams and freedoms?

It is interesting to see the people now, twenty years later, who were there in those days.  So many are "old" now, and I join them, about to turn forty and not understanding what that number means, or how my life came to this place from the young woman I was at nineteen.  My dreams have been crushed by impervious disease, my fight has waxed and waned as my courage and resources have over the years.  I saw a report on the Chinese youth today, how they're not interested so much in these issues, they are much more concerned with material gains.  It reminded me of my generation in the U.S.;  teenagers of the '80s were supposedly all about the money and parties, and looked at by the youth of the '60s in much the same way.  The parallels are not perfect, the world has changed so much and the pace of change itself keeps growing exponentially - but I wonder if another ten years will show a new interest in political and moral issues amongst the Chinese youth.  I always felt a bit out of step with my peers, because I was passionate about these things in a way that would have befitted a different time, but I saw more changes come that made me feel a part of the world I lived in, and the passion of people like those protestors in Tiananmen Square had an impact on me far greater than I'd realized at the time.  It is nothing in light of what their struggle was and is, but I wonder if any of them understand how deeply they affected the rest of the world - to this day.

Playing Games With Medical Detritus

Weird blog post title, yeah? I have recently been having more cognitive trouble - probably due to the Cushing's and also the medications I'm on. I'm having trouble remembering things, even what I'm saying mid-sentence, or not being able to come up with the words I need to say something, trouble concentrating enough to even read, or forgetting things I've always kept really good track of. It's scary frustrating, but I'm learning to adapt.

One of the scariest things has been the fact that I've had a harder time keeping track of my medications, including whether or not I've taken my insulin. My doc suggested that I pre-fill the syringes so I can have the doses for the day set out and I'll know for sure. Great idea! So last night I was filling them up, including my pill box for the week since I'd only just been able to pick up my prescription refills... I always wish there were a way to recycle pill bottles. I started playing with all the little caps and thought, hell, I should make up a game that uses this detritus as playing pieces. People have done some amazing art with medical paraphernalia. I want to play again! It's such a way to thumb your nose at the horrors of it all. How horrors become mundane and retain their terribleness I don't know, but medical hell becomes BORING - grindingly. Impersonal, institutional, inanimate, impervious. Play just screws that whole paradigm, and I love that! When I went in for my first brain surgery, I had just cut off my long hair (which had become thin and stringy and gollum-like) and I dyed it an unnatural loud fuchsia. Did my nails to match. The last thing I remember before totally going under anesthesia was someone picking up my finger and saying, "Hey, check out her nails!" That was fun. If you're going to be a 455lb body on a table while they lift off your face to get the tumor in the middle of your head, you might as well leave a sign of some personality there. Maybe this time I'll write a goofy surgery joke on my body for them to find. Something. I think it's probably a bit of a survival tool, too. It's so hard to feel human when you're going through what can feel like the hospital factory. Maybe they have to detach in order to do what they do, but it becomes obvious that most people you are in contact with aren't very aware of the suffering the patients are going through. No one can really be so. I'm grateful to have the medical care I get, and most of the time they are competent and compassionate, but I am the one living in my body, the only one living my life. There's a window where the suffering is bad enough to permeate everything, but not so consuming that nothing is left but pain, and that is where you can sometimes choose to play. It is an act of defiance, taking a stand, and keeping your humanity. It is the best of innocence to play, and choosing to step into that is an act of hope, standing in health while illness is present. I'll let you know when I finish making up that game.

Beautiful

Crisis is a desperate place to be, and I have felt trapped nearly everywhere I turn by the grief and pain and isolation and fear... and then there are moments of Grace. There is still beauty around me, still joy to be had when I quiet myself and see. I walked out of my apartment and saw that these two plants I hadn't noticed for months had suddenly become a stunning juxtaposition as one bloomed and the other put on an autumnal display. I grabbed the camera and took it in.

Sometimes I think that "grace" is the ability to let things matter.

Diagnosis Recurrence

It's official: Cushing's is back. I went through my four weeks of torture - three kinds of tests, multiple sets of them, every week for a month. (TMI alert:) Each week I had to pick three days to do the tests - spit in a tube at midnight, collect 24 hours of pee, deliver pee to lab, get a few blood tests done, spit in a tube at midnight again, mail salivary tests to a lab in Wisconsin. Yes, I spat in a tube at midnight and mailed it to Wisconsin. Every week for a month. I also kept a daily symptoms checklist. Could you rate your "acne" or "facial hair growth" on a scale of 0-3 every single day? I did the best I could. Blood tests have gotten more difficult. The lab tech who usually manages to stick me with minimal effort said it's getting harder and harder. Nice. So the tests are done, the results are back, and on Friday I saw my primary care physician and she said she'd consulted with the neuroendocrinologist and they agreed that it is definitive, finally. Told me to call his office on Monday.

It was kind of unexpected to feel grief at the "official" diagnosis of a recurrence. It's not like I didn't already know, but I think there's always a part that kind of hopes I'm just being melodramatic or paranoid and that it's really not the terrible news I think it is. So Monday I spoke with the neuroendocrinologist. I was surprised he spoke to me himself and not just his p.a., but I'm glad he did. I had to roll my eyes when he said, "It's not rocket science, it's obvious that you have a recurrence". NO SH#%, SHERLOCK! He said we could do more testing if I wasn't convinced. I almost choked and said, "No, I've known this for around two years now". My highest UFC result was 161 - normal is 0-50...so finally the numbers are supporting the symptomatic evidence. He said that I had such a strong diagnosis of Cushing's before my last (!) brain surgery, that it was very clear. He didn't remember that my tumor was also unusually large. If I'd had a small one I'd have had a better chance of success the first time around. I read in my files that I only had a 20% chance of success. They didn't mention that to my face. He said that whether or not I decide this time to do another pituitary resection or a bi-lateral adrenalectomy, there is a really good chance the first procedure won't work and I'll have to do the other one anyway. My future is not pretty looking. He kept saying that he was committed to working to "get the Cushing's beat", and that even having Addison's Disease and Nelson's would be better than Cushing's. The reading I've done has scared me. He brought up radiation as well, but there is an even lower chance of success with that. I hadn't realized that there is such a thing as "ectopic" adrenals, making it possible for there to still be cortisol production even with an adrenalectomy. It's going to be a really tough decision to make. I have appointments with the neuroendocrinologist and the neurosurgeon on October 6 to talk about it. In the meantime, I'm trying to manage all the medical issues that continue to spiral from the Cushing's.

It's a lot to handle at once, and there are so many things going on in my life at the same time, I find myself wondering about meaning here. I don't believe in deity the way I was taught growing up, and I'm not sure how karma makes sense here either. I don't understand "how", much less "why"... It is unfathomable to me that I am doing this without a partner now, without family to go through this with me in a present way. It is an astounding amount of information to process and tasks to accomplish and decisions to make on my own, while dealing with being so sick throughout. I have never been in so much pain, and dealt with so much grief and had to rise to the occasion functionally in my whole life. Every time I think I've faced the biggest challenge of my life, there is more. I keep trying to make sense of it all, and I don't know that that is possible. I do know that if I can face this with my eyes open, not holding my breath, I will find something new. Walking through fire is going to change me. It already is. I wonder if I will come out of this at all, but I suspect I may find meaning where I never have before. I might finally let go of things I have held dear that have held me back. I think I've always clung to the thought that relationships would make anything bearable. I'm not going to find my strength there, at least not exclusively. Ultimately, we are all alone. No one is going to fully understand what I am going through or have been through. No one will be able to care for me enough. The only way I can survive this is if I find a way to let that go and face my own strengths and weaknesses. There is going to be pain that no one can fix and there are already nights alone where I don't think I can bear another minute. Maybe I won't make it, but I have to find that strength in myself, and step into this experience - including all the things I desperately want to avoid. I don't know if I can do this, but I am doing it today. I think the best way to benefit from the support of the people around me who do step in with me from time to time, is to be standing in that knowledge. I think what holds true for relationships in general is true in a crisis as well; if you find what you need within yourself, you are also more likely to attract that to you from outside. It just seems to count more now. There is no room for pretending.

Four Years Since (first?) Brain Surgery

It's been an uncomfortable day today. I have been seeing the date creep forward on the calendar, wondering how it could have been four years already since the surgery, and at the same time feeling how differently the world looks now. I re-read my post from the one year "surgaversary" here. I was so full of hope, then, as hard as it was.

I don't think anything has turned out as I'd hoped. I still believed that with patience and perseverance I would eventually be healthy. I didn't believe the lurking fear I had that it may come back. How can you and still go on?

So here are where things stand now. After about a year and a half, progress slowed and then started to reverse. Within the last year there have been some jagged drops down again. I am back on the insulin after a difficult bout with blood sugars in the 400s that coincided with the worst insomnia I've ever had in my life, a return of the adrenaline anxiety and headaches. The sugars are more under control, the insomnia was finally medicated to a tolerable level but has since returned. I'm having headaches most days now, the pain level in general is much higher than it was even a year ago, and I'm having migraines again nearly once a week. I gained back forty of the eighty pounds I'd lost - in a flash, and have managed to slowly re-lose about twenty or so of that. It is not a stable thing. My skin is getting bad again, and the shape of my face within the last year has returned to its "Cushingoid" shape. (Ugh, hate that word.) Energy level has tanked, and on some days it is nearly impossible to just get a shower and dressed without multiple breaks. Endocrine issues suck!

On the medical end, I have continued with the same primary care physician, have seen an endocrinologist at the U.W. where I'd had my care before (my doc from the first diagnosis and surgery retired, though), and have now gone to a neuroendocrinologist at Swedish Hospital who is one of the top pituitary docs out there. He is very, very into thorough testing and has put me through the wringer. All three docs have said that they think it has returned even though nothing has shown up on the MRIs I've had, though that is not unusual with slow growing acth producing pituitary tumors. There were moderately elevated cortisol levels in my last series of tests, and the one before that, and the symptoms otherwise are very, very clear (cortisol levels were quite low for the first year or two after surgery). Two of the docs think I should get treated now, no more testing; the endo doc at U.W. has recommended radiation (last option on my personal list). The neuroendo doc has said that his first recommendation would be to have a bi-lateral adrenalectomy, which leaves me with other issues for the rest of my life and doesn't take out the tumor (but does remove the possibility of cortisol production), or to get another transphenoidal pituitary adenomectomy, this time taking out some or all of my pituitary gland as well. None of these options are without risk and major repercussions, some for the rest of my life. For this reason I understand wanting to have all the "t"s crossed and "i"s dotted before moving on. I don't want to have the wrong thing done and go through all of that suffering for nothing. On the other hand, the testing is bad enough in itself and my health continues to deteriorate in the meantime. I see nothing in front of me to inspire hope. So much of the damage is already done, already permanent, no matter where we go from here. I should have the next set of tests done and results in another six weeks, then more discussions with the docs... blahblahblah.

I keep finding myself shaking my head when I remember my five-year plan that ended with me on the Master's Swim Team. I realized this weekend, finally articulated, that I have been holding my breath for much of my life. I think I've sort of been white-knuckling it through terrible losses, holding on with the idea that if I just made it through this one more thing, or these hundred more things, I'd be able to have the life I was supposed to have and then I could look back on the awful things as painful, but not so much loss. I haven't lived it, I've procrastinated, held my breath, thinking that just past those things in the distance I'd be ok, life would be ok enough. It hasn't worked out that way. There doesn't seem to be any place beyond, where my real life will happen. This is it. This has been it. It is too unbearable to fit in my head. I wonder if reconciling this idea is where true hope will be, or the ultimate despair. I don't know. I think my grief debt has compounded interest.

So. To make it through another moment, on this inauspicious day, I am finding small things that feel good as much as possible. British television, long emails with old friends, spice cake with neufchatel frosting, hugs from an ex-boyfriend who came over to help me get the computer to talk to the camera... everything is heavy with this sadness today, but I'm not in bed with the covers pulled over my head. That is something! I still have the questions for myself, where will I be next year? Five more from now? The questions themselves speak of some kind of hope. ...and maybe tomorrow I'll find something to laugh at, or pay a little more on the grief debt.