A Pain in the Neck

Ever since my meltdown about not wanting to take weeks of antibiotics for the embolization-induced blood infection, I feel like the doctors and nurses have been trying to lure me back from the ledge, into a room piled high with antibiotics.

Right now, I am on two types of antibiotics: an IV drip twice a day and two rounds of Doxycycline.  I am still up because my guts are roiling and my intestines feel like a burning cauldron. The overnight intern stopped by to tell me I was getting more fluids, because my low blood pressure is making people nervous. There is nothing anyone can do. I have to be on antibiotics to knock out the infection and the antibiotics make me really sick. There is only one choice, and it is an unpleasant one.

Thankfully, as of right now at least, I am slated to take the IV antibiotics only through Saturday, then I just graduate to one. I don’t know that I’ll feel much better, but one seems like it might make me less sick than two. The bad news is that they want me to take two weeks of oral antibiotics after I’m done with the IV antibiotics. I understood yesterday that the two weeks started yesterday but they mean it starts Sunday. The date on my calendar is August 24. Nineteen days. I still don’t know if all of this illness is from the antibiotics but considering antibiotics landed me in the hospital for days last fall, it stands to reason that they’re not helping. Also, 19 days is a long time to stay out of the hospital in my current state.

Then there’s the worry that the treatment didn’t work. What if it didn’t work and I don’t know? I won’t know until late August.

I suppose that keeps me up at night too. (Also, I think my room thermostat problem is back and I am freezing and have a sore throat. I have just been tucked into some more warm blankets. I would like to be rolled up and tucked into the blanket warmer itself.)

Meanwhile, I felt as if my possible well-time from the PRRT is being stolen, hour by hour, moment by moment, by the antibiotics.

Today my oncologist stopped by and gave me a pep talk. She said we didn’t need this infection from the liver to happen, but sometimes it takes awhile for PRRT to kick in anyway. She says we should knock out this infection now so we don’t have to deal with it later. I agree that it would be silly to put in all this work and feel so terrible for three weeks and then skip the last week because I’m just so tired of antibiotics and feeling like crap and then risk starting back at square one.

I’ve been trying to rally but I’ve felt bad since late May and really awful since late June. I suppose one more week of feeling terrible isn’t going to make much difference at this point if I have some hope of coming out on the other side feeling better.

She understands how frustrated I am. We raced to this finish line with the PRRT and then I immediately ran into a brick wall with this infection.

But this isn’t necessarily my last hurrah. I could potentially receive more treatments in the future to extend my life and its quality. That’s huge news. If I can muster up the patience to get through these next three weeks of crap, then I can maybe look forward to even some more time. And even if I don’t have much more time beyond this, I need to stop looking at this as it’s stealing one-half of my good well time, because there’s absolutely nothing I can do at this point that doesn’t involve three more weeks of antibiotics and illness. Another CT scan was done today to see if anything has happened or if there’s a superinfection of some sort. I’m expecting bad news because it’s always bad news.

For now, I was given a little bit of hope, and that is always more powerful than self-pity and despair.

What do you do at the very end when it’s time to wrap up your life, even if it’s a tiny little life like mine? It’s a question I’ve been grappling with ever since I found out I had about a year a little over a year ago.  I think, for the most part, I did OK on the big-picture issues.

This latest PRRT treatment either hasn’t worked for me or is being derailed by a blood infection caused by my liver embolization or somewhere else in the bloodstream. I still don’t feel well. I want, more than anything, just a few more months of wellness.

Today I got the news that they want me on IV antibiotics at home for at least 10 more days. This is a compromise. They would rather have me do 14 days followed by weeks of oral antibiotics. But when I have only a few months of wellness, I can’t afford more days given over to nausea and dehydration. This means I have a needle sticking out of my chest at all times. This means daily IVs at home and a return to the life I have been avoiding.

I don’t even know if the PRRT worked or if I ever had a chance at all. The embolization infection is eating up all my time. I had hoped for just a few months of normalcy and today I realized I won’t have that anymore. All this waiting since May for some hope of good news feels as if it has been for nothing.

I can’t stop thinking that if I hadn’t gotten this embolization, I would be out celebrating in the sunshine right now instead of waiting to die in this hospital room. I did a few preliminary searches on embolization risks, but since I’d had it before, I thought it couldn’t hurt. I want to be out celebrating, not debating whether or not a needle painfully sticking out of my chest for another week will buy me a few better weeks later on.

I have practical matters ahead of me. Hospitals and credit card companies want to be paid. I need to wrap up passwords and close accounts.

I have to find a home for my three cats.

I have to forgive people who aren’t sorry. I have to let go of the grudges that have become so much a part of me that I feel like they’re driftwood, keeping me afloat. Instead, it’s time to extract some hard-won lessons from them and move forward, unfettered.

Still, I find myself unable to stop making regular run-of-the-mill plans. I want to see movies and go to concerts and eat things.

I have to stop that illusion now. There are a few things I might be able to do.

I have a freelance story I agreed to write while I thought I would be recovering from the PRRT, before I quit freelancing and devoted my main months to fun.

I feel guilty about the people who are seeing me through this in a deeply personal way. I can’t borrow them for too long. I need to return them to the land of the living before death touches them too much.

I feel like I’ve spent the whole year saying goodbye but it hasn’t been enough time. It will never be enough.

Since the blood infection took over on Wednesday, I have been grappling with what to do. I know now that I can’t go back to the illness and the constant IVs. If the infection doesn’t clear, then I know what I am going to do. I’m going to stop the electrolytes, the antibiotics, all the little things and adjustments they have made to keep me going for so long, the tiny things that keep my tiny life going. Then I’ll finally say to this body, the one that’s been trying so hard to die for so many years, “OK, it’s time.” And we’ll finally be in agreement and done.

I’m tired. I thought I had a few more months of fight left in me, but as it turns out, I don’t. I felt myself give up this morning. The ads I had for the vacations I was looking up yesterday mock me as places for the living, not the dying. The topics that come up in my social media feed make me sad. I want to live long enough to get more fine lines and tiny wrinkles. I want free shipping on home furnishings.

Instead, it’s time to pack up my tiny little life and go.

Yesterday, I got some disappointing news so I immediately tried to alienate people who care about me and would try to help. I pouted and wallowed in my self-pity and had internal tantrums until I quickly and finally became tired of myself.

The people temporarily humored my entreaties to be alone and then stepped back in once I asked them back, apologetic and sheepish. I knew what I was doing at the time, but I couldn’t stop myself. In some cases, I knew I couldn’t trust myself from the outset: I told my mom I loved her and I would talk to her today. I couldn’t talk yesterday. I honestly don’t know that I can talk to her right now.

Yesterday seemed initially kind of victorious. The PRRT appears to be working. However, the blood infection from the embolization necessitates IV antibiotics and the side effects negate any good the Lutathera has done, so it’s essentially as if nothing has happened. I’m on a pain pump that makes me exhausted and I feel sick to my stomach all the time. I’m dehydrated and pumped full of electrolytes and fluids and the hateful antibiotics that make my guts roil.

The doctors say that I have two types of bacteria in my blood. They are slowly clearing, but the protocol is two weeks of antibiotics. That’s two more weeks of misery. I thought and hoped they could cut it down from there and remained hopeful. Then the infectious disease doctor arrived at the end of the day: Two weeks is the minimum I would be on these antibiotics. Since treatment gives me probably only a few months of relief, that means that at least one-fourth of my time is being taken back by the antibiotics. This is sad and devastating to me. The embolization set me back, essentially, to square one.

The infectious disease doctor said he would think about what to do. I believe him. My medical team here also is thinking. Everyone is thinking. I’m mostly feeling sorry for myself. I’m so tired. I honestly don’t know if I have enough fight in me to make it through two more weeks of weakness just for a month of feeling OK. I’ve been struggling to hold on since late May—just a few more weeks for a scan, a few days for tests, weeks for insurance approval, a week for treatment. I felt good for one hour and then it was gone.

Two more weeks or a month for the equivalent on the other side to wait for this smug infection to settle sometimes seems pointless. At other times, it seems everything.

Right now I feel defeated. I’m tired from my pain medication. Food services couldn’t hear my order when I called, and eating is an exercise in futility anyway. It feels like the plan to slowly evaporate from my life is working.

Last night, however, when my boyfriend stopped in to see me, we came back to the topics of all the things we had yet to do. Tired of feeling sorry for myself, I found myself planning once more for little daytrips and concerts. I still want these things. I could still maybe have them in a month before I get sick yet again. When I think about the time I want to spend still with family and friends, slogging through a few more weeks of unending nausea and dehydration seem like I might be OK. I just talked to the team of doctors, and it looks like I have at least two weeks of antibiotics to clear up the infection.

When I’m not sad, I’m angry that my time of wellness is coming to an end and will sail on without me, awash in a sea of nausea, humiliation, fluid loss, weakness, pain. When the time comes and my VIPoma hormones soar again, I would like to just stop taking everything. I’ve thought about doing that sooner rather than later. I’m so tired.

But at other times, I’ll start booking things and planning things with en eye to knowing that I’ll probably end up right back here fairly soon and will continue to feel terrible. As for the pain, they’re going to send me home with pain medications for the times it feels like a shark is gnawing on my liver and for when the bones in my shoulder hurt.

What is a month? It’s four weeks I wouldn’t have had otherwise. Is it worth hanging on to this little bit? To these little tiny pieces of life? Even at my darkest times, I say yes.

After reading all the comments and messages,  I realized that if I could be physically cured by good thoughts, prayers, healing energy, and love, I would be done with cancer by now. If only things worked that way. But it’s not like all has been for naught: Kindness is a currency that has kept me afloat through six long and often disappointing years. It’s given me strength when I needed it and seen me through some dark times. It’s been especially illuminating this past year. For all the bad luck I’ve had healthwise, I’ve received good things tenfold back from my friends and can never feel unlucky in that respect, at least. Thank you all for reaching out.

I’m still pretty sick. They’ve balanced out my electrolytes pretty well and I’m currently getting a blood transfusion to boost my hemoglobin. I was hoping this would give me some goth cred, but I’ve always been too goofy to be a real goth. A friend recently who knew me in the early aughts declared me a “fashion goth.” I have to agree. Drinking blood=cute; eating souls=not cute. Velvet in winter=chic; leather in summer=too hot, just wear a band T-shirt. Anyway. I’m getting blood and my great-grandfather is from Transylvania so that’s cool enough for me.

I still haven’t had much relief from most of my other symptoms, and I’m hoping the end of antibiotics will help but I am losing hope. The treatment last time worked instantaneously. However, I asked about the uptake scan performed after yesterday’s procedure and it looks like uptake of the radioactive polypeptides. (A refresher: The tumors have somatostatin receptors, so radioactive peptides are injected into the blood. The tumors accept the gift from the bloodstream, but it’s a Trojan Horse, because then it delivers a high dose of radiation directly to the hormone-producing cell.)

Today I have been tired. I worked on things, and had several visitors, including a former stem-cell inmate, who brought me important periodicals! (And some strength from a strong cancer survivor.) My catgodmother stopped by on her way to stay with the cats, and several other friends stopped by with cookies, Goldfish crackers, and a Super Grover.

I have a lot of big decisions to make and a lot of things to wrap up, from how long I’d like to and could stay here in New York to rehoming the beloved cat trio.

I had a CT scan slated from 7-8 pm so I missed dinner. While I was awaiting my CT scan downstairs, however, I got a powerful liver cramp. My right clavicle started hurting as well. After the initial scans, there was a long pause, I expected the scan readers being so horrified by what was going on, they would stop and tell me, as I suspected, that my liver was exploding. Even pancreatitis hadn’t hurt this much.

They were just waiting for the IV nurse to inject contrast, as it turns out. “Are you seeing anything crazy?” I asked the CT person. After finishing the scan, I went back up to the room and that’s when the cramps started again in earnest. I called my new night nurse. By this time, I was gasping for air because the cramps hurt so much. As it became harder to breathe, I recognized the old symptoms of panic attack had arrived too. Just what I needed. So in addition to the cramps and shortness of breath, my face was inexplicably going numb and I couldn’t breathe. I explained I was now having pain and a panic attack, and the nurse turned on the oxygen to make me feel better as we waited. I hate dramatics, but shifted and whimpered. Everything hurt and on top of it all, I felt stupid with my completely unhelpful panic attack. I apologized and suggested Ativan.

After the Ativan and dilaudid, I slept.

Someone from the morning doctor team came in. There could be a spot where they embolized last week that’s super infected. The antibiotics at least are staving off further infection. I am here at least until Friday, maybe Saturday.

I know when I had cramps in my abdomen, pelvis, and shoulder, I’d hoped it was the pesky tumor-producing hormones dying. I wanted them to be accepting their peptides and explode and leave me alone. I haven’t seen much improvement after the PRRT, and I’m so disappointed. I’m hoping with all my might that it’s the antibiotics that are messing with my guts. Either way, it appears I need a bit of time to wrap up my life. Updates coming soon.

P.S. My room is freezing and the temperature drops by a degree every 12 hours. Facilities say they are looking into it, but it progressively gets colder, and I’m currently under about 10 thin blankets, which appears to be the solution right now. I’m hoping they move me to the private fancy floor if they can’t move me elsewhere. I’m so cold.