Okay Rainbow

I have a date with my mom to watch The Office ten minutes from now. She joined me in Rochester, where there has been such a strange and disappointing series of events that it is difficult to relate, though I will try and do so here. Even with just ten minutes to write, I’m starting now so that I’ll feel obliged to continue after she goes to bed. Motivation is a scarce commodity these days, and so I’m acting on the little morsel of it that I feel tonight for whatever reason… maybe the warmer weather, maybe the relief of a weekend where once again, there is Officially Nothing I Can Do Until Monday. Now there are six minutes left before our Office date. So I’ll lay down something here that'll make me want to return after being captivated by Jim and Pam’s unrequited-all-over-again love for the next hour and a half.

How about this: this is the only time in my life when I have not been able to see (or feel, or think) my way out of a situation.

*

The feeling of not being able to see a way out is big. The insulinoma I have is small. There is no spread or malignancy. But it needs to be removed because it makes a never-ending amount of insulin that constantly takes sugar out of my blood stream and packs it away as fat, which starves the brain, muscles and central nervous system, resulting in Julia Roberts Steel Magnolias-like, orange-juice-requiring emergencies. It should also be removed because some doctors say insulinomas can suddenly become malignant after an uncertain number of years. There are conflicting opinions about that. Some doctors say insulinomas “never” become malignant. One doctor told me with a wide, excited smile on his face, “Guess what? You have what Steve Jobs died of!”

There is contradicting information about insulinomas because there isn’t a lot known. Only 2 in 1,000,000 people have them, which also makes it so that most surgeons and endocrinologists have zero experience treating them. This is part of why this search has taken some time: I am looking for an alternative to a standard surgery that is already very rarely practiced.

I’ve been looking for an alternative because the standard surgery—when performed by most people—involves the loss of healthy organs. Not because the organs are sick or broken, but because it is technically far simpler to remove half of the pancreas and all of the spleen, than it is to isolate and remove just the insulinoma. The medical alternatives to that procedure are so new and uncommon that most surgeons say they don't exist. I have traveled to see a specialist in Seattle, and one at the Mayo Clinic in Rochester, to learn about them. Surrounding that travel has been days and weeks of waiting for records to be shipped from one hospital to another, for them to be received, for appointments to be made, for further tests to be done by each new place, and for results.

During this time I have also learned that there are differences among surgeons who practice the standard surgery. There are actually three different ways of executing that procedure, based on both a surgeon’s level of skill, and their willingness to make a great deal of extra effort to save your organs. I've learned that there IS a complex approach that can save the organs, but that most surgeons aren’t skilled enough to perform it. And even those who are, are not inclined to go to the trouble, because the medical consensus is that those organs are expendable.

I respect the opinion of surgeons who say that I “won’t even miss” half my pancreas and all of my spleen. And I believe that opinion is based in science as much as it is based in their wish to avoid the more challenging procedure. If I don’t need those organs, why should they go to that great trouble? It is a reasonable question. The answer for me is that there has been a strong, wordless, cautionary feeling in me about living without those organs since the beginning. And I pay attention to feelings like that. It is a feeling that was recently validated by a hematologist at Mayo, during a conversation that went a long way to validate my caution.

Finally having that feeling validated, or scientifically justified, was an interesting part of this experience. There have been a lot of interesting parts. This time of traveling and trying has been bizarre, lonely, exciting, disappointing, overwhelming, emotionally exhausting. I am getting near to the end of the exploration now, and hope to have a plan soon. Along the way there has been a lot of hope and crushed hope. And a lot of contradicting information. And uncertainty about deeper things that, to me, are even more important than the medical treatment. It has been a strange, strange trip.

I haven’t written in a while because there’s been too much going on. But here is my best attempt at sharing some of the bigger moments, just some bits and pieces—perhaps not even necessarily in order—from the way.

Electric Surgeon

I went to Seattle to learn about the first alternative to the standard-of-care surgery. It was offered by a surgeon who accidentally said that he worked for the company that made the technology used in the procedure, before quickly backpedaling to say that he didn’t really work for them, but rather, represented them in conferences all over the U.S.. When he said that, maybe especially because of his quick backpedal, I felt like maybe I should judge him for it, but I didn’t really. I was open and very hopeful to learn about the first option. It turned out that the treatment he had available, while it didn’t risk organ removal, was even more invasive and traumatic to the body than the standard surgery. It involves being sliced open wide enough to have my heart moved and my pancreas turned around so that two small needles can be placed on either side of the lesion, and then electrocuted at such a high voltage that it causes the whole body to spasm like those chest paddles do. They give multiple shocks, in time with the heartbeat over a few minutes, then put the organs back in and sew up the chest and abdomen. The process holds no guarantee that the insulinoma won’t return, so that it may have to be repeated more than once in the future. Perhaps for obvious reasons, I didn't want to dive right in, and I was still waiting to hear back from Mayo about the ablation option. But I was happy to know there was at least an option. That I had a choice.  

Words

There was a point where I decided to take the time and look for these alternatives. It was a scary decision to make, to leave the sweet home of friends near Portland, and a gentle and wonderful surgeon, because I wanted to learn what else was out there. It felt really strange to look beyond my friend’s colleague, as I trust her advice above anyone’s, and because I also really just like him. I was aware at the time that I might well be starting off a journey, already at the end of the rainbow. Still, I wasn’t comfortable with his frequently referring to the organ-removing procedure as our main plan. I really wanted someone to understand my priority of trying everything else in surgery first, and only taking the organs as a last resort—even if the other things were more difficult. But I didn't really know the words for that. I just kept sort of haplessly reasserting, "I want to keep my organs". His response to that was to offer reassurance that I didn't need them, which just made me more uneasy. I didn’t want my surgeon to assure me that I didn’t need them. I wanted him to say “I prioritize you keeping them, too.”

It’s taken me all of 2 months and 4,000 miles to learn to say “I am looking for someone who feels confident in his ability to enucleate the insulinoma, given it’s location near the main pancreatic duct, and in the case that that isn’t possible, is experienced with and also inclined to go the extra mile to perform a spleen-preserving distal rather than a spleen-removing distal.” It empowers me to have those words to say what I mean. And if I’d known enough to say that to my first surgeon, it probably would have gone well.

But I’ve also noticed that when I’ve said it to others more recently, there seems to be something mildly insulting about it; a flash of indignation crosses their eyes, like I'm speaking a language I haven't earned the right to speak, and about something that is none of my business. There is a necessity for anyone to understand our options and say what we want, but there also seems to be a an unspoken etiquette that requires a patient not to seem like they know too much. This probably been the hardest thing for me to navigate. In general I want people to know that they are liked and respected by me. And also, I have zero wish to offend a person who will be slicing me open with knives.

One of the strange things about traveling and talking with different people has been the wildly conflicting information I’ve gotten. And one of the fanciest pairs of contradictions I received were within a two day period, where one doctor told me that many insulinomas go undetected for up to 30 years and almost never metastasize, and that I absolutely do have time to investigate the best treatment and absolutely should, and then another doctor tell me that what’s inside of me is a “dark horse, and can kill you at any moment.”

Message Delivery

Taking me to an appointment in Portland one day, the man driving my cab asked what my trouble was. I gave him the short version and then he paused for a moment and said “You’re going to heal this. I don’t know exactly what’s going on or why I’m saying this, but I feel like it’s a message I’m delivering. Just, like, you’re just supposed to know that. I don’t think it’s gonna be a surgery or anything like that. It’s just gonna be gone. Mark my words. On your next Xray, it’s not gonna be there anymore.”

I didn't really know how to reply to that, but thanked him gratefully. I had seen him a couple of other times in town, because there was only one cab company, and just a small handful of drivers. But it was the first time I'd told him anything about myself. It was a startling and odd thing to hear. Something I wish could be true, but that I was afraid wasn't likely.

Sunlight

When I was in Seattle visiting the electrocution surgeon, I stayed in a super-cheap micro-residence place that I never ever wanted to leave. It was on the side of a mountain overlooking the sound and awash in curtains of rain and sunlight. The man who built it happened to be an emergency room surgeon who sought me out when he heard from the housekeeper why I was there, and sat with me for an hour in the sunlight asking me questions, answering my questions, and giving me a kind of insight that no one else had. It was a total gift. The most illuminating, comforting conversation I had along the way, and I was seriously tempted to be electrocuted, just so that I could stay in his place and recover there.

Winter

I arrived in Minnesota in the middle of February in the middle of a blizzard. Hopefully that paints a picture.

Fruit and Nuts

On the train from Seattle to Rochester, I met a woman from Williston named Carol. Her powers of conflict resolution were astounding to me, as I watched her create warm, humane, laughing common ground among a group of people so different in their religious and political beliefs that they seemed otherwise bound for a fist fight. Later that night we were randomly seated next to each other by the steward in the dining car, and I was delighted to have a chance to learn more from her. We had a great, laughing conversation with our two other table mates (strangers also), and then kept talking long after they turned in. We were talking about people and differences and peace, and I remember she was sort of “reading” me as we talked, looking at me for what my story was. I’d made a choice not to share my medical stuff with her at all. At a certain point it can be really tiring to talk about.

Toward the end of our conversation she said, “Do you mind if I pray for you? I know that probably sounds weird. But I don’t have any agenda. I just sometimes know when something is needed. Like I feel it, and this feels like a physical concern. If I have your consent, I’d like to be available in the way that I can.” I was surprised, but not as surprised by this kind of thing as used to be. It was just a wish to give what she had. She then asked me if she could put her hands on me while she prayed and I said yes. Because, why not. I wasn’t raised with any religion. But I’m also not a person to refuse an admirable stranger’s surprising and generous wish to heal me. She put her hands on my arms and closed her eyes and prayed, and her hands grew very hot. I closed my eyes too and she spoke her prayer out loud, and I don’t remember her words. I remember feeling very loved.

After we said good night and I thanked her, it was about 10pm and I went to the snack car. I like walking on trains at night. Like the loud, cold rattle of the tracks in the open-air space between cars, and the low green fluorescent lights in the viewing car and the dark black scattered with tiny lights beyond the big, domed glass panes. I like the whispered conversations between people still awake, and I even like the smell of a train car full of 80 strangers cuddled up with fleece blankies and kids and stiff necks, sleeping in the same room. 

I was also walking because I needed sugar. Part of this condition is managing my blood sugar by having fruit and nuts nearby all the time. Earlier I’d seen the snack car selling some trailmix with both, and some separate packages of peanuts and dried pineapple. Even if I could find an apple, I’d be good. But I needed something. My tongue and fingertips were starting to go numb like they do when the sugar gets really low. I always eat something at that point, but the few times I haven't, things go in the direction of slurred speech, blurry vision, shaking... I guess it goes without saying that beyond that would be worse. I always have some dried apricots or skittles handy for a pinch, so this doesn't happen anymore. But I’d forgotten to stock up because of the earlier needs of the day, packing and traveling and being out of familiar place and routine.

I walked downstairs to the club car, thinking “Just fruit and nuts. Fruit and nuts is all I need” to find the car had closed for the night. With a little electric wave of fear, I walked back up into the dining car to see if they had a bottle of apple juice or soda or something that I could take to bed with me, and all the car attendants had turned in for the night. Thinking about being on a train without station breaks all night, and with no way to buy sugar, I felt afraid in this physical condition for the first time. 

When I got back up to my sleeping compartment, there on my bed was a big, beautiful round orange and a bag of sugared cashew nuts, with a note from Carol. “It was such a pleasure to meet you,” it said. Again, I had never mentioned my health situation, let alone my blood sugar issue. And writing this right now, I realize I have no idea how she would have known which room I was in.

Like Food

I learned that the pancreas is the most difficult organ to operate on other than the brain, and that it is the consistency of warm butter. Not like meat, like one would imagine. It is also very fussy and does not like to be touched, let alone operated on. It can seize up and become inflamed or infected very easily, causing pancreatitis, and can produce chronic leaks of both blood and bile when interfered with. 

I learned that my insulinoma is along the line of the main pancreatic duct. If that duct is cut or nicked during enucleation (the attempt to extract the insulinoma) bile can leak out into the body, and it will eat your other organs—heart, lungs, liver— “like they are food.” This is part of why I went looking for a non-surgical alternative.

Disappointment

I met with two surgeons at Mayo. One is who I came here to see. He offers a very new, cutting edge procedure called alcohol ablation, which has only been performed on 17 people with insulinomas over the last 15 years. Ablation holds no risk of pancreatitis, leak, bleed or organ loss, which are high risks with the standard surgery. This procedure also has, inspite of it's small numbers, a nearly 100% rate of success. The second surgeon I met with provides the standard surgery. At Mayo you have a central, referring doctor, and he wanted me to see this second surgeon as well, so I did. 

The doctor who practises ablation was a kind, even-handed, no-pressure gentleman who gave me honest and thorough information about the pros and cons of his procedure. When I left his office I felt light for the first time in this journey. I texted my family to say how happy I was to be there. The next day however, the surgeon who practices the standard surgery warned me fiercely against the ablation, telling me all kinds of terrible and dangerous things about it and sternly instructed me not to do it. Maybe needless to say, the words of these men in these towers hold weight and authority, and it was hard to know what to do when my heart told me one thing and an expert of very high status, at an institution that is a virtual global Mecca of medicine, was very adamantly telling me another. I felt frozen for a short time, and very alone, unable to sort through the pressure. It was snowing in Minnesota in the middle of February, and I felt afraid and overwhelmed. The one thing I took comfort in was knowing I could take my time. I could wait to feel some clarity, and then act.

I talked with some good friends by phone who helped me think, and asked me good questions and empathized with the difficult choice and gave me support. After two weeks, I finally started to feel clear that the ablation made sense for me. But when I reached out to him, the ablation doctor told me he was no longer willing to work with me, because I had taken two weeks to think about it. Amazingly, he said that because the treatment is so new, he does not want to work with anyone who has any hesitation at all. He doesn’t want anyone having any regrets, because ‘people like that’ are more likely to sue him. I tried to explain that the time I took was for the exact same reason; so that I felt clear and committed to whatever path I chose. But he didn’t care. For a few days I was lost. I had come all that way to find something I wanted, and then, because I took time to sort through conflicting information, it was gone. It was hard not to feel like the doctor decided that I wasn’t worth helping. I also wished he had told me that I wasn’t allowed to take time and think about it before I paid for two weeks in a residence hotel to stay here and think about it.

Bad Ideas

After the ablation doctor said no, I thought long and hard about the Mayo surgeon who offers the standard of care surgery. But I didn't feel good about what he was offering in order to preserve the organs. By that point I knew about the existence of something called a "spleen-preserving distal", which is an advanced procedure that goes to much more trouble to save the organs. But in all our conversations, he didn’t offer it. Instead, he suggested that —in the case that enucleation isn’t possible—he could cut my intestines in half and sew the bottom part of them to my pancreas, and the top part to the side of the bottom, and just leave things like that forever, open and stitched to my pancreas for the rest of my life so that any bile leaking from the pancreas would just go directly into the intestines… forever.

There have been things along the way that I have been confused or conflicted about. But this was not one of them. I immediately felt uncomfortable with this. Partly because I know that a pancreas does not want to have the weight of an intestine stitched to and pulling on for the rest of it's life. This is due to its fussy and fragile nature described above, and to the fact that the contents of your intestines are not supposed to be open to your other internal organs, because you can die from sepsis. One day the nurse practitioner who coordinated things for me looked at his medical plan, and on reading it exclaimed out loud to herself, “What?! Why?”. When I asked what she was reading, she told me she was looking at his plan to cut my intestines in half and stitch them to my pancreas, and she told me I should never consent to have that done. I told her I had felt the same.

I started my search all over again, looking for surgeons who can, and are willing to, perform spleen-preserving distals.

Jessica and Holy Descendants and Crows

Jessica came to visit me for a day in late February. She got on a plane and flew an hour and stayed with me one night, and then got zero sleep the next night in order to fly back early to Chicago and teach the next morning. Like a super hero. She brought me colored pencils and juice in the morning, and her jubilant, playful kindness. While she was here, we watched Zoolander II and The Divinci Code, neither of which either of us had seen before, and both of which actually, bizarrely, have the exact same plot. We took long walks, and we saw a flock of one million black crows flying together over the land. Seriously one million. They covered the whole sky and kept coming for 15 minutes. Crows, which are normally independent creatures that hang with a friend or two or a small crews, but which don’t do the starling murmuration thing. It was eerie and delightful and terrifying.

Helicopter

There is a blue helicopter that lives here in Rochester on the roof of the Saint Mary’s building, called Mayo One. It flies away many times a day, to all different places in Minnesota and outside Minnesota, to go and fetch people who need help, and bring them here. Sometimes when you see it flying low and from the side, you can see a whole team of women and men working inside to help someone live. And probably to soothe them. It reminds me of stories of unlikely animals saving humans… and unlikely humans saving animals. People do so many things to hurt each other. For some reason, this little blue helicopter is one of the best things I have seen us do. Every time I see it, I cry.

Finding Out Why

Like I mentioned before, this quest was guided by a choice to trust an instinctive feeling that wasn’t backed up by the experts around me. Which has been nothing but lonely and frustrating. It is HARD to remember oneself as any kind of authority on one’s own body in a medical context. Surgeons are literally professional experts on your body, and they don’t have any use for your intuitive hunches. If they say you’re fine without a spleen, your own wish to keep it is disrespectful in a way. My wish to save my spleen and pancreas have been met with mostly polite impatience and lengthy explanations about why I am wrong. I’ve been told by every surgeon along the way that a spleen is expendable, that I “won’t miss it”, that it really serves no purpose outside of fighting some bacteria I can get vaccines for, and that not having one “won’t change my life at all”. I have also been told that there is no research that shows that living with half a pancreas instead of a whole one would cause any trouble.

I have no reason to disbelieve those people. But I do. I very deeply, wordlessly, instinctively do.  And I didn’t really have a “choice” about trusting that feeling. I had to. Like that feeling you get once in a lifetime that says, “don’t get in your car right now,” and you don’t, because something won’t let you. We usually never get to find out what those feelings were cautioning us about. Sometimes we do. Sometimes we pass a multiple car pile-up farther up the road that happened just minutes before we got there, and go “Wow… maybe that was why”. But usually we never get to find out why we hesitated.

I’ve been okay with not knowing why I have felt strongly about looking for a way to keep my organs. I’ve found a way to talk about it with doctors saying, “I understand that science says that I can live my life well without half my pancreas and all of my spleen. And I may yet choose to have a procedure done that might cause me to lose them. But it is important to me to trust this protective feeling that I have about it, and ask if you will too.”

One day something happened that may have been finding out why. As part of sorting out the conflicting advice of the two different surgeons here at Mayo, I decided to schedule myself an appointment with a hematologist. I thought it might be helpful to talk with someone who actually knows what life is like without a spleen; who sees and treat people in that position on a regular basis. The hematologists (things can be very team-based here, and THREE hematologists came to meet me at once, like a happy little choir) were incredibly welcoming, and actually congratulated me on asking to meet with them before having a procedure that would lose the organs. They were kind of over the moon about it. They told me some things about living without a spleen that were in contradiction to what every surgeon had told me before. (I hesitate to write them here, just in case anybody reading this doesn’t have a spleen. I really believe that expectations are powerful. And if I do have to have my own spleen removed, I will fully expect that things will go well, and I have no wish to encourage negative expectations in anyone who has lost theirs.) I will mainly say that everything they said confirmed my instinct about it. And one piece of information they gave was of particular importance.

They asked me if anyone in my family has a specific condition, which recent science has shown to be hereditary in people who have lost their spleens. Meaning that, if the condition is present in the family, a person who loses their spleen is very likely to develop it. Whereas a person who has a spleen seems to be protected from inheriting it. When they asked, I told them that my Dad has that condition. And they told me that is something to weigh very seriously when considering a spleen-removing operation. I told them that I had been weighing it very seriously. I just hadn’t known why until now.

Being the Rainbow

One day, when I gave myself a chance to wander around in Rochester without worry (probably on a weekend like this one, where everything is closed and there was Officially Nothing I Could Do Until Monday), I walked into a Chinese Shiatsu and bodywork place. They were an informal little place where they didn’t set appointments so much as they just ask you to wait until a practitioner is available. Their rates were cheap and I decided to wait. I am always in a better mood when medical offices are closed, and for some reason, was just letting my heart be light for a minute. Other people in the waiting room were open, and as different ones came in and out, we were talking. I heard a bunch of people’s stories, and really enjoyed the time. Then a man came in who was a little topsy-turvey, and shared that he was at Mayo to get help with a vestibular problem. He had an inner-ear disease that was making it hard for him to walk, work, think, read, everything. He was constantly dizzy, having vertigo, and a pounding, ringing pressure in his ear. He told me his family didn’t even believe him about it, his friends didn’t understand it, and that he’d just seen a doctor who’d told him that while the condition was real and very detectable on all of their tests, there was nothing to be done about it, and he’d just have to live with it for the rest of his life. He looked beyond heart-broken.

I told him that I was diagnosed with the same thing as a teenager, and that I still have trouble with it sometimes. But that I’ve had stretches of years without any trouble at all. And that it is way better now than it was in highschool, or even 10 years ago. I empathized with his experience of the people closest to him not understanding, and sometimes not even believing what’s going on. And especially with the anguish of hearing “it would never go away.” And I told him that that isn’t true. I told him that what doctors should be saying instead of “there is no help for you” is “we can’t help you,” and that it can and does get better. I gave him resources I have used, from online vertigo resource groups, to a great specialist in Chicago, to exercises and medications that did the most good for me in my late teens and twenties. I told him what he was dealing with was the hardest thing I’ve ever dealt with physically, and that even if others can’t see it, it’s not in his imagination. I told him it is real, and that it can heal, like any other part of a body can heal, even when there isn’t medical help. I told him that was something I felt like he could do if anyone could.

He hugged me and his eyes were like sparkly lights. “I don’t understand what’s happening here,” he said. “I just wandered in to this spa randomly, on the worst day of my entire life. Just having taken all these God-awful, dizziness-inducing tests, and then being told by the doctors at Mayo that I have a disease there is no cure for. Because if they can’t help you, no one can help you, right? And then I met you. And you’re like…  a rainbow! You’re like everything I need in this moment, and if I hadn’t met you I don’t know… how things would have gone with me. I mean, not to be grim. I know you know you’re being nice. But you’re never gonna know what this did.”

I told him I sort of knew. Because other people have done it for me. It’s a thing where you pay attention to the moment like it has some real potential, and you notice what you can be for someone, or what you have to give, and you give it.

Orange

After staying in a sort of shoddy but clean and cute in a retro-way residence hotel here in Rochester for the two weeks I took to think, I noticed myself waking up sneezing in the night, and with pains in my face, both of which are weird for me. I was taking Advil and allergy medicine both to sleep at night, which is also weird, and for some reason one morning it occurred to me to open the bedroom closet, which I’d never used before. Inside was a hole in the wall about two feet across behind the pipes to the bathtub. The drywall around it was warped and puffed out like cauliflower, and brown, red and black mold was growing in branches all over the wall. There was a plastic sheet taped with a single piece of tape over the top of the hole, and otherwise hanging open around all it’s edges. I moved out that afternoon.

A good thing about that place had been it’s cost. $60 a night is way more than I can afford, but it was also way less than any other place in Rochester. The place was also willing to have me without knowing a firm departure date, which had been helpful. Leaving placed me in an odd position. I had just heard the day before that the ablation surgeon might no longer willing to work with me, and though that wasn’t confirmed yet, I was feeling worried about it. It was snowing that day when I moved out, and I went and sat in a nearby café with my rolly bag and tried to think about what to do. This was probably the lowest point of this whole time. I felt alone and exhausted, with no idea of what to do next, and not having a home base felt un-mooring. Listings on Trivago and Airbnb were all beyond my means, and the few friends who knew people in Rochester at that point had not gotten back to me. The people in the restaurant were nice enough to let me stay for a few hours while I was looking online and making phone calls.

When I walked outside to get some air, I noticed that the door right next to the restaurant was for a place called The Rainbow Motel. I went inside and it was lovely. Kitchy, cozy, lovingly decorated. Shabby enough to be cheap, but well-cared for enough to feel safe. Amazingly, their rates were also $60, and I made a reservation for the next two days and moved my things upstairs. That night, I woke up with bed bug bites. I had bedbugs in an old apartment about 5 years ago, which is how I know about them. I am not allergic to anything I know of besides them. When I’m bitten even once, the area around the bite swells up to the size of half an orange, and it is the most painful, grossest thing. I got four bites that first night (which I somewhere heard was usually the amount of bites given by just one bug. An infestation causes many more than that). I turned on the light, lifted my pillow, and saw one little guy traveling swiftly across the white sheet, puffed out with my blood, and smushed him with all the anger in my tired heart and went back to sleep.

The next day, aware of the rareness of my affordable accommodations and hoping that I had killed the only bug, I slept there again. I got three more bites the next night, and so, itchy and swollen and deformed, told the hotel owner, checked out, and made my way back to the café. That day was worse than the one before. But my living situation is fine now. I’ll save that story for another time because it is remarkable and multifaceted. The short version is that I put everything I owned in a dryer on high for an hour (that kills any vagabond bugs), soaked my suitcase with a spray bottle full of 90% rubbing alcohol (that does too), and moved in to a new place that is quiet, safe, clean, beautiful, and cheap, thanks to the magic of a woman named Bao. When I arrived in my new place, after a long, weird day of not eating much, I was having another low-blood sugar episode. I opened the refrigerator to find a big, beautiful round orange on the top shelf, and ate it.

Foster the People

While I was waiting to hear the ablation Doctor’s final answer, I went to a Bernie Sanders rally. And then I phone banked for him all day the next day… the day before Minnesota went in to caucus. And then he won Minnesota. And that felt great.

Roller Coaster

After the disappointments here at Mayo (which still feels like an oxymoron), I sent my medical records to a surgeon at a big hospital in LA who advertises surgical procedures for insulinoma in particular, which he expressly states are intended to “preserve healthy organ tissue.” He writes on the hospital’s website about the inclination of surgeons to remove organs in this specific surgery because it’s simpler, and how that is by far an easier procedure than the delicate work of saving them, and that his whole practise is geared toward saving as much of the healthy organs as possible. A good friend randomly sent me a link to his page, and perhaps needless to say, I was beyond excited to find him. Reading this felt like it might be my pot of gold.

I overnight mailed my records, and it took him 14 days to get back to me, and each day his medical assistant told me, “It will definitely be tomorrow.” Toward the end of that time of waiting, I had the idea to ask my dear friend who is the liver and pancreas surgeon if she had any knowledge about this doctor. She replied saying that he is actually widely known as something of a “shark”; that he advertises exactly what patients want to hear, but is actually not good at what he advertises, and in generally is not a very skillful surgeon at all. This was profoundly confusing to me, given that what he is advertising is the most advanced form of an already advanced procedure, and it doesn’t seem like someone could offer that without being good at it. But my friend says he is actually relatively known for this contradiction among liver and pancreas surgeons, and that colleagues of hers who have worked with him said that they would never recommend their family members to him, or have him operate on themselves.

This was so much sadness. Maybe even worse than when the ablation doctor saying Sorry Nevermind. But past the disappointment, I am very grateful to have that inside information. I am lucky to have my friend. In place of this Doc, she recommended two people who she thinks are not only qualified, but would also be very much inclined to do a spleen-preserving distal in the case that enucleation is not possible. One of them is here at Mayo (though no one here had told me about him) and one is in LA. I've overnight-mailed my records to both, and I am presently waiting to hear back. 

Momma

My mom joined me here in Rochester a few days ago. It was brave of her to get on a plane from Arizona, switch flights in Colorado, and come all this distance, because traveling is not her favorite thing. And she’s already done her share of mothering. She’s more than earned a leisurely retirement just from her years of bringing up me and my brother. I am a little bit embarrassed to have called on her. But I reached a point during the Weekend of The Mold, Bed Bugs, and Sorry Nevermind, where I wasn’t great by myself anymore. I am grateful she is here. 

Which brings me back to where I started, and the fact that I have no idea what to do. I am waiting to hear back from new doctors, but I don’t feel any more sense of clarity or hope or home in any of this than I have since it started. Having run out of options for alternative procedures, I’m back with the major surgery being the way to go. And even though I am very glad to understand that there are differences in how it may be performed, I just don't want to do it.

That doesn’t mean I'm not going to. It is just daunting to face a major surgery with a 4-6 week recovery process, during a time when I don’t feel a very strong life-will. I don't say that to be scary. I have zero wish to do myself any harm. It is more the opposite. I’m concerned about my ability to undergo & recover from a major physical trauma when I don't feel like fighting for my life.

I know that is an awful thing to say. Probably the awfulest. But we all feel awful sometimes. We feel heartbroken, raging, depressed, vengeful, scared and ashamed sometimes. And then we heal and go on. Right now, I feel hopeless about my future, and untethered to the world. In more normal circumstances, I would be patient with that feeling, and take care of myself through it, and trust that it would heal with time and positive action. The last thing I would do is put myself through the trauma of a major surgery in the middle of feeling this way.

I do realize that the surgery may help, or I wouldn't be pursuing it. I also know, deeper than I know anything, that you have to fiercely want to be here in order to mobilize a body’s healing and recovery forces. I don’t feel that way right now. Right now tiny cuts aren't even healing. Not once on this journey have I felt like “Yep, let’s do this thing and get back to living! I’m determined to come through it great!” and that concerns me. This is another reason I've been looking for a less traumatic procedure.

One More Message

After I sent my records to the electric surgeon in Seattle and to the ablation doctor here at Mayo, and before I had heard back from either of them, I waited in Hood River long enough that I decided to go ahead with the procedure in Portland. I made an appointment for the CT scan that the surgeon there requested. On my way in to the scan, I got a call from the Seattle doctor saying I was a candidate for his procedure, which made me so happy, and set things in motion. In Seattle, the day after I met with him, I got the call from Mayo and then left for Minnesota a few days later. But before any of that happened, on my way from Hood River to Portland, where I’d have the CT the next day, I was accompanied by the same magical cab driver.

It was a cool thing to see him again. On the way out of town, we talked about weather and mountains and plans and prospects, and then he started talking to me again in the way he had a couple weeks earlier, with this gentle, relaxed sort of warmth. It is a hard tone to describe, but I have heard it a few other times in people who just decide to open up and say how things are in a way that is un-pressed and generous. I heard it later in Carol, and in Bao, and have heard it in other sparkling strangers in the past. Maybe it’s what Being the Rainbow looks like from the other side.

Whatever it is, I always wish I had a witness or a recording device to verify it. This time I recorded him. He had started saying things that I couldn’t believe he was saying... and I pulled out my phone and started recording. I thought about asking first, but then I thought the self-consciousness of being recorded might change him. So I just recorded, and then when we got to Portland, I showed him the recording and asked if he would like me to save it or delete it, and offered to do either one in front of him. He said I could keep it, and that I could share it with anyone as long as I didn’t make any money off of it. Here is a portion of the recording:

Him: “Just say ‘I am receiving’, okay? And ask for our- ask for help okay? You don’t need anything to ask for angels. You can say ‘Hey, I need some help right now. I could use some angels, how ‘bout a hundred of ‘em?’ Cause there’s no shortage of us. Okay? And, you might not know it but, it’s all inclusive. You’re part of the love… Be prepared for this because you’re probably never gonna see me again. But it’s a good thing. People come into people’s lives for a reason. And not all of us are just regular people, you know. I probably ended up in Hood River for this—because I had never heard of Hood River until six months ago. I came here to be with my kids and as soon as I got here they moved! (Laughs) If all of us were perfect, we wouldn’t need God. But we’re all made in the image of God. I’m not gonna get all religious on you. I’m not gonna get all Jesus-freak on you. But, but open your eyes. * Keep your heart open. And then see yourself happy and healthy, if it’s your priority, then you’re healed.

Me: (*at the point of the asterisk above, music started playing, and I thought- maybe it’s his phone’s ring tone, because his hands are on the wheel and he hasn’t turned anything on. But the music wasn't coming from one location. It was just kind of around, like it was coming out of the car’s speakers, but the radio console was dark. The music kept playing for the next 3 or 4 minutes. I said:) What is that music?

Him: It’s me. You got a long, beautiful life ahead of you, and you’re going through what you’re going through now so that you can be that woman who qualifies for the gift that you’re about to get. And it’s going to change your life. You’re never gonna forget this stuff. You’ll never forget. Come on—how often to cab drivers make sense?! (Laughs.)

Me: They seem to make a deeper sense than a lot of people I meet.

Him: Yeah, but that’s because you’re not runnin’ in to regular cab drivers all the time, are ya? (Laughs) It’s a wonderful life out there. It’s a big world and it’s full of wonder and glory, and it’s all yours for the taking. All you have to do is accept it and receive. If I get you there safely. Ha!

Me: You will.

Him: Of course I will. Of course I will. (Silence)

Me: So you’re saying I don’t have to figure it out.

Him: it’s already been figured out. Your whole life has already been figured out. It’s not for you to figure out. If we were supposed to figure stuff out… then our purpose that we were born with would be known… you know I don’t… you know we came here to—okay. Do you know that you’ve already been to heaven? You’ve already been there. You are here by choice, okay? You came here by choice…. We have the power within us. It’s already given to us. All we have to do is believe. You don’t even necessarily have to believe in God. Believe in yourself. Cause God’s already in you. Whether you believe it or not, whether you like it or not. Us, together, when we commune, when we all get together, that’s God. When we’re alone, that’s God too, but it’s just a little piece of God. We’ve all got God in us… We don’t have to praise and worship God. You can praise and worship whatever you want and he’ll still love you. But what it all boils down to is that he’s given us all the tools that we need and you just need to accept them and utilize them, or learn how to.

Me: Can I ask you a question.

Him: Yeah, of course. 

Me: (Long silence.) I’m trying to be worthy of the things that have happened to me. And you say, “You don’t have to be worthy, you just get to accept it, like accept…

Him: Receive.

Me: …receive yeah. I puzzled over this for a really long time, and I feel like a disappointment to myself. Because I’ve been given a lot of chances to see what you’re saying. And I feel sorry in a way that I’ve been sort of frightened to… to give myself over to it, right? To that deeper understanding.

Him: That’s what I’m talking about, is that you have to accept it. There’s nothing else you have to do.

Me: But I think it’s like, I’m afraid to accept it because I’m afraid that it will make me alone. Like profoundly alone. Because the world believes other things. Like our culture teaches a different story—like that you can’t heal your body, and that we’re dependant on systems to save us in every way: financially, socially, professionally, physically. We’re taught that we don’t have enough in us or with us. I’ve experienced some things that feel like natural life to me, but that people call miracles because they don't fit inside that cultural narrative. And I feel like if I claim those parts of my lived experience, it puts me outside of everything. And I don't want to be alone. I want to be together with people.

Him: You ever get a gut feeling?

Me: Yeah

Him: and it’s always right, right? It’s not a gut-- it’s not your actual gut. People can call it telepathy or whatever they like to make it sound fancy or make themselves feel special, but it’s a basic awareness. We all have it… But the hardest thing for us to do is to let go and receive it. Why? Because we’re human. That’s the human part of you. It’s okay to be scared of that. We’re always scared of things that we can’t see… But once you release and accept... you’ll see. And you can’t stop it. And you already got the light in you. I can see it. I already know.

(Silence)

You came to Oregon to hear this. This is going to heal you more than the doctors are. The doctors are tools to help. You know they’re just a vehicle. You’re more healed than you know. You just have to accept it.

Me: Okay

Him: And it might take you a week to talk yourself into it, but, but you’re gonna get it. You’re gonna be fine. One day we’re gonna laugh at this. We’re gonna laugh at this.

Interpretation

When I requested my medical records from Mayo to send to LA, I read through them. I’m not sure why, as I’ve avoided it before. Too much information when I’m already holding enough. Maybe I had nothing better to do that day, but I sat down in their lobby and read them. I got to the part where the radiologist reviewed and reported on my most recent MRI, the one done in Seattle. The radiologist's report said the MRI showed that the insulinoma had been removed, that it was gone, and there was no further lesion anywhere else on my organs.

I thought about the cab driver and what he said that first day about my “next Xray". My relationship to this kind of thing (as you may have gathered) is complicated, and at times a little confused. I’ve experienced my body healing before from something it "shouldn't" have healed from without medical help, so that is within my understanding of what is possible. But I also don't have an allegiance to that always being the case. Any more than I have an allegiance to doctors always being right. I just allow for both. And in that broader range of possibilities, I mostly try and listen for what feels true. In this case, I didn't really feel like the insulinoma was gone. Because I am still experiencing symptoms, which are admittedly better than they used to be, but definitely aren’t gone. I don't feel healed, I guess. 

I asked the doctor about it, and he seemed startled and confused. He had a different radiologist review the MRI again, and told me they corrected the report. I don't know what it says now, but I will make sure to have another MRI before they cut me open. Just to be sure. 

Right now, I'm waiting to hear back. And listening for what feels true.