A Pain in the Neck

Last night, I talked my boyfriend into buzzing my hair in preparation for the next round of chemo. This chemo is the kind that makes your hair fall out, and I was due for a haircut anyway. Unfortunately, the clippers gave out as we were nearing the end, and it’s a little shorter and a little more uneven than I had anticipated.

Leaving the hospital this last time was tough; I cried on the way home. Instead of the hope of getting and feeling better, I just saw more of the same stretch out before me in a neverending landscape of illness. Luckily, I had some friends in town from Dublin, Ireland; Dublin, Ohio, and Cleveland, plus a surprise visit from a former New York bootcamp friend who now lives in Chicago, and all the activity kept me happy and distracted before my Friday morning doctor appointment. Before then, I honestly thought might be the last time I might see some of my friends. However, the doctor gave me some hope with the latest plan.

I had hoped the plan would involve the new PRRT treatment, but that is being held up by negotiations with health insurance companies (of course). Since the diarrhea caused by the tumors has just cleared up a little bit, thanks to the opium tincture, I don’t have time to wait for the health insurance companies’ red tape and greed, so I am going to start on Wednesday with an older type of chemo. In fact, it’s chemo I’ve had before: carboplatin and etoposide. They will be given over about hourlong sessions for two days in a row, every three weeks, for six rounds. (That would make my last day July 26.)

I have mixed feelings about this chemo. I had it before as part of my augmented ICE treatment before my stem cell transplant for Hodgkin’s lymphoma, but it was a high-dose in-hospital treatment, along with ifosfamide. It was the “I” of ICE that had really knocked me out, so I’m somewhat hopeful that the carboplatin and etoposide won’t be that bad. I also have to take Neuopogen injections to boost my bone marrow, as I did before stem cell collection years ago, and that makes your bones ache. Otherwise, the side effects of this seem like the usual chemo side effects: nausea, some fatigue, hair loss. It’s familiar.

The doctor said I would know within the first few treatments if it were working. I’d be trading this diarrhea for the nausea, fatigue, hair loss and bone pain. It doesn’t seem like much of a trade, but count me in. The hope, of course, is that this buys me some more quality time. I’ve felt a little bit better having a plan and having a date to set my sights on. She said she would be surprised if this didn’t work, but of course, the radiation was supposed to work and the embolization was supposed to work and the Dacarbazine was supposed to work. I’m also a little worried, because I’ve had this before, and I don’t think it shrank my pancreas tumor, which was present five years ago when the doctors thought it was part of my lymphoma.

Still, it’s given me a bit of hope. In the meantime, if the PRRT becomes available, the doctors will weigh whether or not I should stay on this treatment or if I should switch to PRRT. If this treatment seems to be working, I think the plan would be for me to stick it out through July to keep the PRRT as the next step further down the line. If this chemo doesn’t work within the upcoming months, then PRRT will be the next plan. I’m focusing on smaller annoyances—my hair (or lack thereof) and chemo eating up most of my summer—to avoid the bigger questions like: What if this doesn’t work? How many treatments can I fail? 

In the interim, good thing have happened–friends have visited and set up a GoFundMe and done all sorts of nice things. I’ve been blogging less as I’ve been out in the world more. After my last visitor left yesterday, I didn’t blog since I’ve been spending too much time alone with my thoughts. I read and decided to spend time alone with other people’s thoughts instead.

Recently, people have been asking me if I would do a GoFundMe for medical bills. I have been reluctant, because I have felt strange about it, but I finally relented when some of my old fitness bootcamp pals put a GoFundMe together and after another group of friends sent me some funds and after I asked another group of friends what they thought. The answer has been that people want to help and it would make people happy, so it’s up! (I also nearly forgot that my half-birthday is around the corner. It’s something I celebrate every year somehow, just a fun non-holiday that I acknowledge with people who share my birthday.)

People have done so much already, and I don’t want to come off as if I’m asking for money. It’s there for people who want to donate, but I have received so many gifts and so much support that my heart is full. (And so is my belly, thanks to a recent candy influx.) Please don’t feel pressure. Everyone has done more than enough.

The bills are high and I’ve spent a lot over the past five years, I feel as if it won’t leave me destitute and that I will be OK. Why is bankruptcy or destitution the measurement though? I am not a fan of the healthcare corruption and that bankruptcy and crippling debt are a fairly common side effect of being sick. It shouldn’t be. We accept that prices will be inflated. We pay off medical bills for years. In exchange for fixing our broken bodies, we have broken spirits.

When I am in the hospital or at the doctor, I feel as if the meter is running: I turn down tests, argue over ambulance transportation, and question what’s really necessary, because I don’t want a big bill. I’ve skipped medications. Currently, BlueCross/BlueShield is refusing to pay for the last day of my hospital stay in January because, the company argues, I was well enough to go home. I was not. The doctors tried to prepare me to go home but switching some of my intravenous medications to oral ones so that I can exist outside the hospital. I know that if the choice came to laying down and dying on the hospital steps or crippling debt what I would choose.

Someone I know died at 28 of lymphoma; her back had been hurting her for awhile before she had it checked out because she didn’t have insurance, and the cancer was detected too late to save her. We all know stories like this, right?

What I would really like is change. I have a vision of terminally and chronically ill people descending upon healthcare lobbyists and insurance companies, shuffling forth holding our IV poles and hospital gowns closed like post-apocalyptic zombies and somehow physically dismantling the corrupt system. I think it my mind it’s the French Revolution meets The Walking Dead. I’m unsure of how to make this happen. I vote. I write letters. I’ve marched. I don’t feel like it’s enough. I’m not a leader, but when the call comes for one more broken body to fight the system, please count me in.

I also have some news on the healthcare front that I’ll put in another post. I will be starting chemo next week, as the new treatment is not available yet and we can’t afford to wait much longer to try to get the pancreatic tumors under control. Why is this treatment—that has been FDA approved and has been available in Europe—not ready? Negotiations with health insurance companies.

My blog is called A Pain in the Neck, because that’s where one of my initial lymphoma tumors manifested itself. If I had a blog about the accompanying insurance issues, I’d call it A Pain in the A**. Pardon my language. Or my asterisks. A Pain in My Asterisks.

I don’t have time to list all my issues with health insurance. Our system is broken. Most people agree, and say something should be done about it. Why do so few profit at the expense of so many? Why is this allowed? Why do people vote against their own interests?

I hope it can be fixed, though I think it’s too late for me and my abbreviated lifetime. If the new PRRT treatment is cost-prohibitive, I know I’m not going to do it. As of right now, I know the hospitals and insurance companies are in negotiations so that it will become available soon. I’m personally doubtful the new treatment will work for me, but I would like to try it since it’s one of the only things left to try for me at this point.

What price tag would you put on the dignity of not waking up in a diaper full of your own waste? My health insurance won’t cover opium tincture, one of the only things that helps my tumor-related diarrhea. I decided to pay $150 per month for the tincture as I hope it will improve my quality of life. I am getting new health insurance within a few months, so maybe it will be better or worse. I’ll probably end up paying that amount for something else.

The hospital is also in the process of trying to get my health insurance to pay for my last day in the hospital in January. The doctors had been trying to prepare me to go home by switching my medications from intravenous to oral and trying to adjust my electrolytes. According to my insurance, I didn’t need to be in the hospital the last day as they prepared me for release.

If there were a way to take all my anger about being ill and channel it into a rage that would change things, I would. The health insurance company can kiss my asterisks.

I recently read a former co-worker’s book about chronic pain, and she talks about how she will never be one of those people who is grateful for an illness. I, too, can never find it within myself to be grateful to cancer or peripheral neuropathy. I’ve found things to be thankful for and good things despite the cancer, but I will never be thankful for this disease.

My cat reluctantly models an otter hat.

However, I do still have a lot to be grateful for, and since I’ve been particularly sick for the past several months, I’ve received so many words of support, and also some notes, cards, photos, and little gifts. I don’t even have photos of all of them or room to thank everyone, though I definitely am so grateful to everyone who took a little bit of time to send me message or gift. People have made meals, delivered treats, sent gift cards, and chipped in. I have mix CDs, and flower seeds, and cards. People have given my cats toys, and, much to their chagrin and my amusement, even an otter hat for cats.

I now have a cat camera that I can use to spy on the cats from my hospital bed. It’s a Black Mirror episode in the making. The cats, as it turns out, don’t do a lot of things when we’re not around like ordering Seamless or entertaining company. We have caught Ziggy, the most vain of the cat trio, admiring himself in the mirror. He seems aware that he is cute and that everyone coos over his pink nose, and he actively seeks attention from visitors and hams it up for attention.

I’ve been really sad (though not terribly surprised) that Facebook is using our data for evil, since I’m always on social media, and I like using it to keep in touch with people.  It’s been especially helpful when I’m lonely at the hospital or stuck at home recuperating from various treatments, and I’ve heard from people I otherwise might have lost touch with.

Hearing from people from various points of my history have been a bit of a This Is Your Life, as I’ve had the chance to reflect on different time periods. I realized I’ve been, for the most part, extremely lucky in the jobs and coworkers department. Coworkers could always be counted upon for a sense of humor, whether things were good or less than ideal. I have so many inside jokes that I can’t even begin to explain why a drawing of an owl or Talbots gift card from coworkers is particularly funny. Some of my former coworkers gave me a Seamless gift card with a note about the lunchroom thief that plagued our building, just days before the viral Twitter thread about a work lunch thief. (Like the Twitter example, our lunchroom thief was more into the chilling psychological aspect, taking frozen meals and throwing them behind the refrigerator or stealing one lone California roll from a package of six.)

Some of this music is not cool at all as I had promised on the tape sleeve! Someone from high school sent me a pic of these old mixtapes I made for him.

A lot of people hated high school. I was awkward and wore all black (or confusing alterna outfits of velvet, plaid, flannel, band-tees, Doc Martens, etc.; see My So-Called Life). I had so much teen angst but luckily it was the ’90s, and it was in fashion then. Despite all my inner turmoil, I actually liked high school, and a good portion of the people I went to high school with.

The high school is often named one of the best public schools in the country and it was big enough where you could usually kind of find your niche and at least a few fellow freaks if you were a bit of an outcast. One of my favorite summers was spent hanging out in a Dunkin’ Donuts parking lot and the local Cleveland MetroParks. My main damper on the summer was my part-time job at Boston Market (where I fared much better than my friends working way more than 40 hours per week at Sea World) and having to read Grapes of Wrath for A.P. English. (I will never forgive John Steinbeck for that novel, especially after The Red Pony too.) I made some lifelong friends in that parking lot.

Being a teen is always terrible, but I really met some of my favorite people during that time. I pretended to hate everyone, but I guess I can admit to myself now that it wasn’t true. It’s been fun reminiscing about those memories: mixtapes I made, getting in trouble for playing with my hair in journalism class, sitting sideways in my desk in Algebra so I could more easily talk to my friend behind me (it is the only class when I’ve ever gotten a D grade and finally the exasperated teacher walked over one day and turned my desk around so I would face the board), making long cut-outs of notebook paper people to hand out in the hallway, passing long notes.

I can still fold an old-school note into a little square. When a friend sent me some aromatherapy oil, I remembered her handwriting from those notes. The two of us would sometimes snag someone’s notebook in Spanish or study hall and then write a note by putting one word on each page. We thought it was hilarious, but the notebook owners didn’t always agree.

One of my college friends who lives in Columbus, where I went to Ohio State, tagged me in a photo of our old apartment building, which was full of goths. (Yes: Goths.) So many of our friends lived in that building at various times, and it was a convenient less-than-10-minute walk to the dive bars and their goth or ’80s nights (and there was a different club for each night). We joked about moving back in and trying to hang out at the fancier mall/shops that cropped up after they razed the south campus’ bars that were so packed in their heydey that the police would set up barriers with ropes to keep people from spilling into the streets.

I actually didn’t like college that much, after going to a rural campus I didn’t like for six months. I transferred to Ohio State and ended up living in Columbus for a long time, but I wasn’t a huge fan of of actual college. I think it’s because I knew what I wanted to do and wished I could just get a journalism degree already. I was the first person from my family to go to college and I was always aware of the meter running on my tuition too, so I got through as quickly as possible, graduating just before I turned 21. I think maybe I didn’t have the typical college experience, but again, I made lifelong friends, and I’ve continued to make friends through those friends.

Some people I randomly reconnected with over the years: a high school friend’s pen pal, someone who did the same volunteer abroad program I did when I was 17. I’ve made new groups of friends, unexpectedly, like when I signed up for a workout bootcamp class that took place at 6:30 am in a bar/music venue. We worked out inhaling the aroma of the previous night’s spilled beer, or sometimes we worked out in a nearby park and later a makeshift space that also had theatrical productions. People had to do burpees if someone was late, and other people in the class would groan as my tardy figure approached in the distance. Sometimes classes ended with plank stories, when we would hold a plank while each person delivered a line of a story we’d created, and sometimes, we’d get together for something called Bad Decision Mondays that involved drinks and no working out. 

A mix CD a friend made for me, with no Ugly Kid Joe in sight!

Though I have mentioned I have tried to seize every well moment over the past several years, the truth is that I have always been a little paranoid about good things being suddenly taken away from me or that happy times will end. (Maybe it relates back to my longtime obsession with mortality.) I don’t know much about Buddhism aside from the dharma talks at the beginning of yoga classes, but over the years, something that I’ve heard before yoga is about the belief that suffering is caused by the impermanent nature of things. I know I’m not interpreting this the correct way, but that’s resonated with me since I’m often so focused on the impermanence of things.

When my family would go on vacation when I was a child, for example, during the following weeks I would torment myself about the previous week’s fun. A week ago today, I was at the beach. A week ago today, I was doing this. Etc. You can imagine how I am in breakups or other big life changes, always thinking back to better times. Four years ago on Easter, I was at the hospital for my stem cell transplant, and I was so hopeful cancer would be in the past for me. I’m not as bad as I once was, fortunately.

There’s a lot of talk about living in the moment, but when things are good, I sometimes try to grasp at them desperately as the moment slips away. I know it’s inevitable that the time will pass. There are times when I’m completely happy and content but then prematurely a little sad and depressed knowing that this goodness will come to and end. I used to suffer from terrible Sunday night blahs.

Of course, nothing lasts, not happiness, not sadness in this temporary existence. Things in my life were good again, then bad, just OK, great, fine, meh, really good, etc. Sometimes I worry I’ve run out of goodness and all that’s left is suffering. Yet I know that cannot be true when so many people have made me smile so much over the past few months and over this lifetime.

I’ve been trying (and often failing) to come to grips with a “new normal” as these tumors take over. Sometimes, I pretend as if I was given a choice: I could have 35 good years followed by five good years with illness, instead of a longer life with less joy. I would have chosen this, and it helps.

According to the doctor today, I am probably going home on Monday afternoon. Though it seems as if the embolization did little to curb the ongoing diarrhea, I should be OK at home with the daily four-hour IV fluids and taking some oral electrolytes, as well as the three daily octreotide hormone shots. For about a week, I will also have IV antibiotics that last about a half hour to an hour every day to avoid getting a liver abscess after the embolization.

One of the radiation oncologists stopped by yesterday and she still thinks there’s a chance for improvement, but I am fairly disheartened. At the very least, if I can get the tincture of opium approved, though my health insurance still deems it unnecessary, I may not have to wear diapers overnight so much. That’s one step towards a little bit more dignity for now.

Yesterday, I was able to look to the future a little bit and hope for some tentative summer plans, even if it’s just a short train or car ride out of the city for a night or two. I can maybe order some flowers for my garden plot if I am able to plant them this summer, and I’ve made some notes about what I’d like to happen to my perennials should I not see the end of the season.

I’ve mentioned that people live for years like this, with the diarrhea and the shots and the IVs. I would not like this quality of life long-term, and my doctor knows that. I am not afraid of death; I am afraid of a life in which I have no part.

If it is the pancreas tumors that are causing all these issues, then I’m not sure how much more can be done. There is the PRRT therapy when it is approved and if I am approved for it, but I’m not very hopeful. Many of the other treatments to try to curb these effects work for other people but not for me: octreotide shots, oral medications, radiation, chemotherapy, and embolization. Since October, I have gone through these treatments one by one. MSKCC is one of the best cancer hospitals, and though there are a few other places like Mount Sinai and MD Anderson Cancer Center, I don’t think there are very many other treatments that are available or that are not known to me. I will do some research into what’s available. If there is a downside to being at a renowned cancer hospital, it’s that it especially alarming when some of the best doctors and specialists can’t come up with something.

I just met with the doctors and it really seems like everything has been tried up until this point, so the next step is meeting with my oncologist to see what the next step might be. It seems grim. People ask if the doctors have told me this is the end, and they haven’t. It isn’t hard to read between the lines. Some ask if the doctors have told me to prepare for the worst, but for me, the worst isn’t quitting this life: It’s barely living at all.

For now, something that I need to come to terms with is that I will probably never have a “normal” life again. After my embolization, during my 24 hours of hope, I thought about trying to take a vacation and seizing some wellness time, but I don’t know if there will ever be a time when I am not tied to IVs and functioning as I once did. I don’t think I’ll be able to return to working out and being a ClassPass devotee. What little muscle I’ve worked to develop over the years is gone and I have trouble even gripping things very hard.

I need to figure out how to function in the world when I can’t function as I once did. People do it all the time. When I got the news in July that I would always have cancer, I knew this day would come, though since I’m young for this cancer and the doctors were hopeful I had years or decades, I thought I had more time. Though my peripheral neuropathy has made me miserable for much of the year, I tried to take advantage of every day as much as I could.

From October through December were some of the hardest months of my life, personally, and there were times when I felt as if I were going to lose my mind. I’m more at peace now, at least, and losing my body doesn’t seem as terrible, but it’s scary. I’m not looking forward to the process. I would trade time for quality if I could. If someone could offer me a week of being well and then the end, I would do it, versus months of this. No one gets a choice though.

The plans I am going to make aren’t going to be the plans that I had thought, but there are still plans to be made. In the meantime, I am finding a way to get through the days with a certain sense of peace.

For now, I’m going to have more breakfast pizza. (I was left with half a pizza to eat, so I’m having pizza for breakfast, lunch and dinner today.) I’m waiting to get transferred to another room so I can avoid my vaguely racist roommate. There is a woodworking class in the patient recreation lounge today, and I am intrigued. After this gloomy post, it’s clear I have had too much time for self-reflection and should get out and interact with people.

I am worried I am being too dramatic and giving up too easily. Loved ones provide much-needed optimism. My boyfriend thinks there is still hope for the PRRT. My mom has hope a miracle will happen. Friends remind me that there are always treatments in the works.

I just don’t know what to do though. Sometimes, I’m overcome with the grief that’s so big, I want to run into the streets and cry for help—for something. At other times, I’m at peace and feel OK about whatever lies ahead.

Earlier this week, I had a roommate who I subconsciously turned into a symbol of everything about my situation—and myself—that I dislike. In the end, I realized that it was not her at all that I found so upsetting, but my lack of control and the fact that this cancer will not be tamed. I felt terrible for making her the unfair target of all my anger. Subsequently, I got another roommate for a few nights. Now I have a new roommate, who is watching Fox news.

I can her her making sounds of disgust over reports of the Democrats. She and her husband talked about their fear of Muslims “being allowed in the country,” and maybe equated them to the Nazis (I didn’t hear the entire conversation), but then complimented a doctor on his “strong German name” in a way that made me uncomfortable.

I have asked to switch rooms, and hopefully I can be moved tomorrow when something opens up after people are discharged. I’m so tired, but I’m too upset to sleep.

I miss my old roommates.

These situations in particular make me uncomfortable, because I feel as if I run away and don’t do the right thing. What would the right thing be? I had introduced myself when they came in and told them to let me know if they needed me to turn down lights or noise.

I don’t know if they noticed my name, because it’s not on my bathroom supplies like it used to be. Is it wrong of me to assume they dislike Mexicans if they watch Fox news? Is it wrong of me to assume they dislike brownish people because they are afraid of Muslims? Why am I making these assumptions? What if I’m wrong? Or worse: What if I’m right?

Since I’m half-Mexican, no one really guesses my background. Sometimes people ask me where I am from, and I say that I am from Cleveland or from Ohio and then I can tell from their reaction that it is not what the person meant. Many people hazard guesses—Greek, Jewish, Indian, Native American, Italian, Mexican—but no one claims me as one of their own. In general, I think I’m often shielded from racist comments because vaguely racist people think I’m something and don’t want to include me in their jokes in case it’s at my expense and they offend me while overtly racist people can’t target me with the matching disparaging comment. This sometimes shields me from some harsh realities.

Once someone said something about Mexicans to me, and I was so shocked, I didn’t know how to react. I was too dumbfounded to say anything. I still feel bad about not saying anything back, but my jaw is hanging open at the memory still. I think about that moment with deep shame.

Also, why do I sometimes give older people a pass? I respect my elders, but does that give them the right to be racist or sexist or homophobic? On the train a few years ago, an old man next to me with an Eastern European accent started to talk to me. I was all bundled up, with my hood pulled up, and not really interested in engaging in conversation. He said some things and I nodded to be polite and only half-turned to him, and then he said something about how too many women working was causing men to be homosexual. That kind of woke me up from my half-listening. Why was I politely listening to this? I didn’t initiate this conversation that was being held with half my disinterested hooded face against my will. I could feel the eyes of people across the aisle looking at me. “My stop is coming up,” I responded. “And I don’t really want to talk to you.”

Still, that took everything I had. Why am I not more outspoken? I used to be more of a firecracker. What happened to me?

I don’t know what to do. I don’t want to engage. I suppose at best, I could be labeled “one of the good ones” in their eyes. Not a troublemaker. Not a bad hombre. Is that what I want?

I’ve felt so helpless in all aspects of my life recently. I don’t know how to make a difference anywhere with anyone.

She just wished me a good night’s sleep. I don’t know what to do about people who are nice on an individual basis, but have a general hatred and fear. I think that some people can be good and nice, but why does she hate Democrats? Would she wish me a good night’s sleep if she knew the concerns that lurk in my liberal heart?

We both are going to sleep with fear and pain and cancer. Why must there be extra fear and pain? Must there be?

I realized recently that much of my sadness lately is the feeling I haven’t had much to look forward to. I have friends coming to town, and I’m excited for that, but it’s been a little hard to plan for anything not knowing how I feel. We just know we’ll be together, and that’s enough. These past few months have robbed me of the ability to daydream, and cancer has now taken away my ability to plan.

I have no long-term plans or long-term hopes. Yesterday, when I thought maybe the embolization would provide relief from the chronic diarrhea caused by my VIPoma tumors, I stayed up late, flirting with the idea of plans. I looked at Trulia at houses in impractical locations that I can’t afford. I browsed Uniqlo’s new collection, even after I vowed earlier this year that buying new clothes at this point is pretty pointless and after I put up some things on Poshmark to try to get a head start in getting rid of my things.

The likelihood of my purchasing a house probably hasn’t changed at all since I realized that the embolization probably won’t help with the hormones from the cancerous tumors causing all these side effects. Sometimes it’s the planning or daydreaming that is almost as enjoyable as the experience itself: poring over vacation destinations, fantasizing about what you’d do if you won the lottery, thinking about creative projects.

I’m a daydreamer and at least 50 percent of what I imagine doesn’t come true, but I like thinking about the possibilities.

Plans don’t have to come fully into fruition to be fun. When my mom was in town, we looked at so many recipe possibilities and planned to make a crepe cake and then three imperfect crepes into the process decided to make regular crepes and abandoned the more time-consuming cake that looked like it might end up as a failure. My favorite part was (and usually is) eating those first few broken up thick pieces of the tester crepes, lazily smeared with filling.

Last night, I stayed up, giddy, thinking about just a few more months of possibly normalcy—maybe even another year. I knew that if the diarrhea returned today, plans would seem laughably futile. My small respite of daydreaming was fun. Tonight, I’m sleeping the solid slumber of someone who has little to think about.

It looks like my fears might be coming true: The embolization didn’t do much to alleviate the symptoms and diarrhea. I was hopeful through the morning, but by late afternoon, my guts were again roiling. The doctors say that sometimes there’s an adjustment period, but they had also said that results tend to happen fairly quickly after the ablation. If there is good news, it’s that I’m not feeling much of the post-embolization syndrome.

I feel silly for hoping I would get a little bit better. I’m too disappointed for words or even to feel anything. I suppose there’s still a chance that maybe it will improve a little bit, but it’s not very likely. Even if it does, it might just buy me another year or a small window of time. The PRRT is still an option to try to control the pancreatic tumors, but it is not yet available, nor is it a guarantee it will work for me.

I think it’s time to be more realistic about my expectations of the rest of my life. I think the return to normalcy that I’d hoped for isn’t going to ever happen.

I’m too sad to talk about anything right now, so I might be a little quiet. I’m going to read or watch TV or read some celebrity gossip and shut down for a little bit, but I’m still here and just taking a little time.

I don’t think embolized is a medical term, but I’ve had my embolization. For about 15 minutes this afternoon, it looked as if it wasn’t going to happen today, and the tears of disappointment I’d cried hadn’t even totally dried when someone popped into the room to tell me not to eat and that I was back on the schedule for the day.

Overall, it’s been a weird day. I woke up around 5:30 am freezing from the cold air in my room. I mentioned it a few times, and thought I could fall back to sleep, but it was so cold, I went in search of warm blankets. I walked back into the freezing room and then immediately left again, searching for a lounge or warm refuge. I asked one of the nurses/admin staff I’d seen before about a place to warm up and she said I could sit in the open conference room. (Also, I didn’t want to just disappear and cause a panic as missing patient so I made sure someone knew where I was and checked to see if it was OK if I left my room for awhile.) I wrapped myself in warm blankets on a couch…and then fell into a deep sleep until I was being woken up to make room for a meeting. By that time, my room was warmer. It was one of those weird unexpected sleeps where you feel you’ve been asleep 1,000 years.

The doctors came to see me and I took a shower and waited for my embolization. In the afternoon, the nurse said that it hinged on my potassium numbers, which had been too low in the morning, but she returned later to tell me that my potassium was at 4! I haven’t seen that number in a long time. But then the doctor came in to let me know that a lot of emergency-type cases had come in and I’d been bumped, something I knew that could happen. After that disappointment, I was so happy to be put back on the schedule and wheeled down.

Though the interventional radiologists yesterday seemed confident that the embolization might solve the diarrhea issue, the doctor I talked to before the procedure wasn’t as sure, because the pancreatic tumors are also probably producing VIPoma, the hormone that creates all this chaos. (I, too, share this doubt.) My hope is that this procedure provides some diarrhea relief and then the doctors can get a handle on the pancreatic tumors if necessary. He also went over the risks of a punctured lung in case they did ablation as well (they didn’t) and infection risk. After some paperwork, I was wheeled into the room and met the doctors and anesthesiologists, who assured me they would take good care of me. It wasn’t the procedure itself that worried me; it was the risk of it not working to even slow this diarrhea. One doctor had a Wonder Woman scrubs hat on. I would have complimented her on it, but the sleep medicine got to me first. “I feel funny,” I announced as I always do, and then there was nothing. I always irrationally feel it’s impolite somehow to drift off to sleep immediately after meeting everyone. I worry about what I’ll say to people. I haven’t seen The Exorcist, but maybe it’s something like that.

When I awoke, they were adjusting my oxygen tubes in the recovery room, and they told me I had to lie flat for awhile. Since the embolization went through my femoral artery, they would check for bleeding on a regular basis and check the pulse in my feet. They put an IV in my hand while I was knocked out, something that I feel happens almost every time I’m put under. (Better that the tricky IV is put in while I’m asleep than when I’m awake.)

The embolization went well, and they embolized two tumors, and they did not need to ablate. Now we wait and see if slows down the insane amounts of VIPoma my tumors are producing.

While I’m tired in the hospital, I decided it’s OK to watch some things I’d never watch like Sex and the City 2 and reality TV, but as my body tries to kill itself, I absolutely can’t watch the weird made-up dilemmas reality TV “stars” (oh, no, someone’s mini dog is pooping in the house or someone needs to find just the right handbag!) or shows where brides fret over not finding the right dress, so I stick to food or remodeling competitions. I settled on the  show where people cook with incongruous ingredients in the grocery store, hosted by Guy Fieri, whose shows I have been watching with more enthusiasm ever since I saw that recent Shane Torres comedy bit.

I had no idea what time it was in my post-procedure haze, until a nurse asked if I knew I had to lie flat until 10. “Ten pm?” I asked. “What time is it?” I think they told me I needed to lie flat for four hours before I was fully awake. It was 8:30 pm, and my first thought was that my mom had probably been waiting for a call from me from the moment I’d said I was being wheeled down at 4. I didn’t bring my phone, so the nurse made the call for me, and my mom was so happy. I had to lie still to make sure my femoral artery didn’t spring a leak. Another nurse explained that I had to take it easy on that artery so I couldn’t sit up, move my legs, cough or laugh, and immediately my body felt the urge to do all of those things. But I watched the cooking show: Full of pain meds I wasn’t nauseated or hungry so it was innocuous viewing. I’m a little hazy on the details of the show now that I look back on it, but I think if I can keep the pain and nausea under control, I can have a somewhat normal few days. I don’t think the anesthesia has worn off yet, so I’m not sure how I’m going to feel.

I should be asleep, but I want to hang on to the hope that this fixed things somehow. If I continue to have diarrhea in the next few days, I’m afraid this hasn’t worked. As long as I stay up, I can avoid possible disappointment. I looked at things online like duvet covers and summer plants and events as possibilities instead of just thinking about IVs and death and sickness.

Tomorrow, at least, I can talk to the doctors and see if my main oncologist has a pancreas plan. I am on a lot of nausea drugs, so I’m not sure I’ll be able to eat, but the nurse told me that I’m not on a clear liquids diet anymore and can order off the regular menu, which is good because I have my eye on the stacked eggplant special.

Tonight, I’m grateful I was able to have this embolization done, and of course, for all the kindness everyone has shown me. As I was being wheeled to my procedure today, I felt so at peace and was thinking of how lucky I was, and that was before they even pumped me full of various drugs. I am actually so behind in thank-yous, and I don’t even have the words to thank so many of you. Please know how grateful I am for everything and for this dilemma.

I could have become very depressed, and I definitely have moments of fear and anger and sadness, but I have been constantly reminded of bright spots in my life.

I have allowed myself a sliver of optimism. It feels dangerous, like I’m holding something unstable and explosive in my hands.

Tomorrow, I’m slated for an embolization of some of the new hepatic tumors. On the images, there is one big one, but there are probably smaller ones as well. First I have a scan, and then the interventional radiologist will do the embolization of the tumor. This was something they were ready to do in January, but tumors didn’t show up on the CT scan. Now they have something to embolize.

The goal is to stop the diarrhea, and hopefully then my quality of life will improve and I won’t need to the needle in my port.

The interventional radiologist who did last year’s ablation stopped by today and explained a little bit about what to expect, including recovery. This has been a little bit of a whirlwind, since I didn’t expect to end up in the hospital or have this embolization, so I didn’t even think ahead to recovery. She said people often get postembolization syndrome after the procedure: fatigue, nausea, and pain. It’s typically bad for about 48 hours but I might get a pain pump, something I remember from my stem cell transplant days. Recovery isn’t as speedy as it is after ablation.

The doctor who is doing the procedure tomorrow also stopped in to explain some things and answer questions. Since I’ve had a Whipple procedure, I’m at a higher risk for developing an infection and a liver abscess. They will put me on some antibiotics as a preventative measure. If I do develop an infection, then I’ll need to have a drain for a few months. It sounds gross, and I’m not particularly excited for a longer recovery since my windows of wellness are increasingly short (a year and half after the stem cell transplant, eight months after the Whipple, seven months after the ablation).

Allowing for recovery time hadn’t even occurred to me. I’ve been living day by day, IV bag to IV bag.

But…a window of wellness. I’m daring to hope for a little bit more time. Not using diapers, no more daily IV infusions, a life nearing somewhat normal. For how long? The interventional radiologist said that I’ll definitely feel better. I asked the second doctor why they were doing only the liver, and he says those are the ones that cause the most morbidity and the most symptoms. The pancreatic tumors can sit and wait for awhile, apparently, but it’s these others that are more often fatal or cause health problems. It’s what led to Steve Jobs’ death and the death of Dave Thomas of Wendy’s.

Today I’ve had regular blood sugar checks. Yesterday, my nurse gave me an insulin shot after my results showed a blood sugar level of 700. I have no idea what that means, but the nurse was very concerned. My potassium was also reported as high. I love candy so much and had just eaten a few mini Cadbury eggs and was about to tuck into a piece of Pie Lady & Son cherry pie. I thought for a second my sweet tooth finally did me in. As it turns out, the results were wrong somehow, and then my numbers were kind of low so I had to drink some orange juice at night.

With this healthcare system, you always hear the ring of a cash register in the distance. I’m going to try to not have these blood tests anymore as soon as possible. The doctors had wanted to do a pregnancy test before the procedure, even though I have been post-menopausal for about four years. I know in the grand total of the hospital bill, the test won’t be much, but I’m not interested in paying even the $5 or whatever it ends up being for a test that probably shows up as $100–$200 on the bill before insurance.

With my current muddled mind, I hadn’t given much thought to the embolization possibly making me feel better, even if it means a week of pain. My apologies in advance if I don’t get back to you right away as I recover. I think I may be huddling with my pain pump and muttering incoherent things for a few days.

I’m allowing myself to be hopeful for some more months of wellness, the treasured times between tumors, doctors, treatments, the hospital. Three of my best friends are visiting town next week, and the plan was just for low-key hanging out. That’s still the plan and I’m hoping that this new plan includes less diarrhea and minimal pain. Since January, I haven’t allowed myself to make many plans, aside for some morbid end-of-life ones. I’m still prepared for the end. These tumors have been aggressive and persistent and resistant to treatment. I’ve been closer to death than I had realized in January. But if I could wring a few more good months out of this life, I’d like to.