A Pain in the Neck

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.

Within the past 15 minutes, I have heard my roommate push the nurse call button four times because she wants to take a shower and the nurses have not arrived quickly enough for her. She had called about getting prepped for a shower earlier, but when they arrived, her breakfast had arrived and she didn’t want it to get cold, so she sent them away and they promised they would come back. As soon as she was done with breakfast, she started calling, drumming her fingernails on the arm of her chair as her impatience increased.

Now it has been five times. They arrived. She is now appeased.

I have been cold in my hospital room for the past few days, because my side of the room has a constant cold breeze coming from the corner of the room. It’s as if all the ghosts of people who have died in this hospital are put through a tube and funneled through this vent and graze me with a cold spectral finger as they pass. (Or, you know, if there were a cold breeze in your room.) When I ask for the heat to be turned up, she complains because she’s too hot. I finally got them to sneak the heat up last night and was snug and warm when she awoke and complained that it was too hot and she wouldn’t be able to go to sleep. I woke up a few hours later freezing and raided the blanket warmer for more blankets. (To be fair, I love the temperature hot and like my thermostat set somewhere just shy of Bikram yoga studio all winter.)

Now she calls and waits for her bed to be changed, as if we are in a luxury hotel and not a cancer hospital. Tap-tap-tap go the nails. She calls two to three times.

As you know, my body is trying to poop itself to death because of the hormones created by the tumors, and I’m actually dangerously close to losing this battle right now despite the supplements and the IV fluids. It’s pretty gross. The doctors observed this past week that it’s a very poor quality of life. With some tincture of opium here (not covered by my insurance for outpatient use), I at least don’t have nightly accidents. I can’t tell you how much human dignity that has returned to me simply by not waking up in a wet diaper every time I fall asleep.

I have to collect my “output” in buckets in the bathroom, as does she. It’s not pleasant, and you have to call to have the nurses record your output and dispose of it. It happens pretty often, because I’m so sick. I always remember to call, but yesterday, I forgot, once. She made an angry call to the nurses’ station about the “filthy” bathroom. I apologized and she begrudgingly accepted.

Then the dam broke. It’s that small thing that causes all the pent-up anger and sadness to flow freely and rush out. I spend a lot of time cleaning up after myself, and it’s not easy because I don’t feel well. It’s embarrassing and disgusting and I hate this so much. I didn’t expect to have to wear a diaper to bed every night shortly after turning 40. I spent an hour yesterday afternoon crying bitter, angry tears, about why I am here, someone who is literally full of crap. I sometimes feel like I am more of a burden than anything. She is staying an extra day because she wants an extra day of recovery after her Whipple, the procedure I had done a few years ago. I resent her for being able to make that choice, for having the luxury of an insurance policy that will allow that, for being able to go home at all when my future here is so uncertain and dependent on the diarrhea that just won’t clear up because of the spreading tumors.

I have devoted at least an hour to disliking her. I even hate her now as she calls someone on the phone and her demeanor shifts to her public-facing one. I’ve made terrible judgements about her and am irritated with her very presence. I have assigned her crimes that I can’t even prove. For example, the therapy dog did not arrive yesterday, and I’m convinced that she told them not to send a therapy dog to the room because she is allergic to dogs, even though it would be only on my side and would be a hypoallergenic dog. I have the chorus to Tori Amos’ “Waitress” (a song I haven’t thought about in years) stuck in my head.

How did I get to this hateful ugly place? Last night, as I huddled beneath my extra blankets, I wondered if she had become symbolic of the cancer for me. Something/someone who put things outside of my control. An entity that is never happy with a little bit, but wants it all, and now. A constant, unwanted presence. The stronger she feels, the more she wants and the less she is satisfied. I have assigned her the traits of my cancer and have made her a manifestation of my disease when she is just a woman, like me, making her way through a terrible and scary situation. I don’t know who she is at all, and this post reflects on the type of person I am, and I don’t know if I like it.

I hold up an image of her and use it as a mirror. People have been so kind to me and done so much to cheer me up and make me feel better, and sometimes I worry it’s wasted on me and that I don’t deserve it. I worry that my public face and the voice I write in for this blog isn’t the real me. It’s often ugly. Sometimes only a few people hear the bitterness and anger and panic that I regularly vent and they see only the best self I can present. Now I am trying to accept that my roommate is not a bad person, but just another person whose patience and courage is being tested by this disease. Yet another part of me just wants to wheel my IV pole to her side of the room and smack her upside the head with a pillow. Someone recently sent me When Things Fall Apart: Heart Advice for Difficult Times by Buddhist nun Pema Chodron, and so far, the thing I most relate to most is from her pre-monk life, when her husband cheats on her and she picks up a fistful of gravel and throws it at him. (I would have chosen a boulder.)

She is demanding, but she does not deserve the hate I’ve projected her way. This blog was a way to drain my venom from my fangs. I don’t hate her; I hate this situation. I am angry at the cancer. She goes home tomorrow. I am slated for a tumor embolization, but I’m worried my tumors won’t be so easily dispatched.

Still, someone suggested that while she is asleep, I “allow all the dogs in.” I enjoy the mental image of a pack of dogs just outside our room. I open the door and a scene ensues like the Bumpuses’ dogs in A Christmas Story as she stands, apoplectic, in the doorway.

When I arrived at Sloan-Kettering urgent care Thursday night, a few curtains down from me, someone made the same observation about some of the little bottles they use to collect blood. “These look like little wine bottles,” she said. They do. We would all rather be having wine, wouldn’t we? Could we all forget cancer and crack open tiny bottles of wine with the nurses and all take a break from everything?

The answer is, of course, no. Sometimes I can fool myself into taking tiny breaks when I don’t worry about it anymore, and I can almost pretend I’m back to my old self.

Today, at least, I am not sleeping all day, and I haven’t had the fever-related shivers. However, it looks like my port has bacteria growing on it, so they’re thinking about taking it out. I’m a little frustrated, because I put off getting one for years only to have it get infected after three weeks. I just had a regular IV put in, and it’s always tough to put one in because of my tiny veins. On top of that, they have to stick me for a blood draw.

I thought I would be out of here in a few days once my electrolytes came back and once the infection cleared up, but that’s going to be trickier than I thought. The doctors today said they are thinking of taking the entire port out to get to the root of the infection. They would also like to do an MRI to see if a new spot is an abscess (maybe related to the infection?) or a new cancer spot. The new route seems to be possible ablation or embolization of the tumors in an effort to stop some of the symptoms that require the daily IV hydration.

As for the PRRT, which I was somewhat hopeful about, they wouldn’t be able to start that until my infection is cleared up and there is a way to give me chemo through a port or another line since my veins are all shot. I can tell from the doctors’ responses that this is off the table, for now at least.

This also seems longer than a few days’ stay, so I’m settling in a bit. I’ll know more hopefully a little later.

When I told my mom today that the cancer had spread, she cried. She rarely cries. “Last Friday was better,” she said. She was visiting, and we’d gone to Mood Fabrics and I’d found a Latin Mass for her and one of my high school friends joined us for dinner. “I want to have more fun times with you,” she said.

Me too. That’s how I’ve felt through all this cancer news. I just want to keep having fun and enjoying life and the company of loved ones. I have been, for the most part, as much as possible, though the doctor today noted that with all this diarrhea since January, it’s a very poor quality of life. When I was feeling OK in December, my VIP hormone levels were around 100 or a bit higher; today and since I’ve been feeling so sick in January, they’re around 730. The scan news wasn’t good. The tumors are spreading. It is what I expected, giving how I’m feeling.

I am also in the hospital. I had been concerned when the bandages surrounding my port had smelled mildewy. I think water had entered the bandages, and I asked the at-home and oncology nurse it they would be OK, and I took the needle out on Wednesday, but yesterday, I got a fever and pretty bad chills. It passed, but when they returned in the evening, I ended up at urgent care, and the site tested positive for a bacterial infection. I’m on antibiotics. My potassium is also pretty low, so hopefully I can get a boost.

As for the cancer spreading, well, there’s not much I can do. Ideally, they’d like to control the tumors, but the radiation and the Dacarbazine didn’t help. There’s the new treatment that I’m a little pessimistic about, and a few other things before they run out of options.

I’m OK with letting go if this can’t be controlled. I’m tired. It’s been five years of ups and downs, and quality of life is very important to me. I don’t want to be a ghost haunting the remnants of my old life. Either way, things will be OK, for me at least. I’m looking forward to an end to suffering, whatever happens, though I am sorry to take leave of my life, which as been pretty great.

I am starting this post by stressing that I am fine. Monday morning, I was on my living room floor being examined by EMTs. One of my cats kept sniffing my eyelids. (There’s always one pet that would be the first to eat you should something happen. I know it would be the soft little black cat, who I’m convinced kept checking for movement to see if it was safe to take a little nibble. He doesn’t enjoy cold food.)

I had showered and set up my IV like normal that morning so I could finish my infusion before I go to work. My boyfriend set up the bag and tubing, and I’d asked if it was all ready to go. I meant that it was ready to be hooked up to my port and already primed, the saline at the end of the tubing. He said it was ready to go, but he meant something different. When I hooked it up, it hadn’t been primed, and so it was just air not liquid. I unhooked it right away, but soon I felt like I was going to pass out. I slumped to the floor and couldn’t say much. Unfortunately, what I did manage to say was, “I can’t breathe,” right before I started vomiting bile. I was still holding the IV, which was still running. As I lay on the floor, I could feel the saline pooling around my hand, but I couldn’t move.

I heard my boyfriend call 911, but it seemed far away. I also managed to say, “No. Too expensive. COBRA. No.” We got the notice the other day that our insurance cards would start working again on Monday after 5 pm. (Since we’re on COBRA, I’ve had to pay up front and then try to get reimbursed from the insurance company, so I’ve been avoiding the doctor and prescriptions. This is hard to do when you have cancer. Currently, I have two potassium pills left and I’m supposed to take four per day, and I have two syringes left for my octreotide shots and then that’s it. I made a flurry of prescription calls Monday and Tuesday to try to get more medications.)

I wonder how many people’s last words in the U.S. have to do with insurance coverage, or lack thereof. I felt like I would be fine with time and I’m not looking forward to the bill, even with insurance, and I’m so annoyed with myself for allowing this misunderstanding to happen. I should have just double checked the line.

By the time the EMTs arrived, I was feeling a little bit better and I told them what had happened. They said they wouldn’t be able to take me to Sloan-Kettering and a hospital sounded even more expensive. (I still owe for my January ambulance ride.) I insisted I would be fine, and they did some vitals and an EKG. I kept finding those little round gel stickers on me for the next 24 hours. One EMT told me that it’s smaller air bubbles that are dangerous. I honestly hadn’t been worried about air bubbles, with all the IVs and chemo I’ve had. I just felt faint and weak and couldn’t express that I would eventually be OK. They said something about the air bubbles being scary. I wasn’t scared though, just faint and nauseated.

Before they could leave, I had to talk to a doctor to confirm that I didn’t want to go to the hospital. I could hear the EMT talking to the doctor, and he basically said I panicked when I saw air in the line. Maybe he was trying to downplay it so the doctor would sign off on letting me skip the hospital. But it was very much like: Oh, this hysterical woman thought that she was dying and panicked.

First of all, I am dying, but slowly. But I am not panicked, and I was not panicked on Monday morning, even when I was laying on the floor in a puddle of saline and bile.

“That’s not what happened,” I said. “That’s not what happened,” I repeated. No one responded. I sometimes feel as if I’m already dead, but somehow still here. I wondered briefly if I had died and no one could hear me anymore. I would have tried to clarify more, but then I threw up some more bile and decided that if being dismissed as a hysterical woman was going to help me avoid going to the hospital, then so be it.

Otherwise, I’m waiting on prescriptions that have been delayed because of COBRA. I am taking out my port needle today as soon as I’m done infusing since I’m worried my dressing got wet, and it smells mildewy. I hope it’s not infected, because that’s a whole other pain. It’s nice to be free of the needle for a bit, even if the weekly needle placement is tender for a few days.

Since my symptoms aren’t letting up, I’m having a scan on Friday. For the first time, I’m not nervous, since I know it will show that I have cancer. If the Dacarbazine and octreotide have been working, I’ll be surprised; maybe this new treatment might work. (If I am eligible, if it doesn’t cost too much, if, if, if.) If a lot shows up, then that makes sense, and I’m not too upset if the end is nearer. The end is the same. Hopefully the scan will give me a better idea of at least what to expect in the next few months.