A Pain in the Neck

In retrospect, I would have gone into urgent care on that Saturday night when I got my first fever instead of Sunday, but there are a lot of things you would do differently with hindsight. (For instance, I would have purchased property in New York City—with what money I’m not quite sure—when I first visited for my 10th birthday.) But—thanks to the efforts of the doctors who tried so hard to get me out of the hospital because my mom was in town and no thanks to the stubborn Klebsiella in my blood—I got out on Sunday, just in time to spend a little bit of time on the outside with my visiting mom for Mother’s Day.

It was a gloomy rainy day, and I didn’t have much energy, but we went to the Czech restaurant we always go to when she’s in town for a nice light Eastern European meal of halusky and Hungarian goulash, and we stopped by my community garden. “How long was I in the hospital?!” I wondered aloud when I saw the garden, which had totally changed in the previous week. Spring’s colorful tulips were gone and in their place was a purple palette of allium, irises, lilacs and even purple tulips. My hosta leaves had unfurled, and my allium were complemented by the white flowers from strawberries, bleeding hearts and lilies of the valley.

Getting out of the hospital was winning the battle, but there’s still the war. In my online patient portal, I took a look at the CT scan results. I try not to do that, because I’m not a doctor. I will know more next Wednesday before chemo. However, it looks as if the tumors are the same size as before and as if I have another new possible tumor, which I knew from what the doctors had told me earlier. We’ll see what the doctor has to say next week. As far as I know, the PRRT is approved but still not available as the insurance companies and hospitals hash out the money details. Even if it is available, I’m still not optimistic that it will work, and it’s pretty much one of the last things they can try at this point. These tumors are stubborn and I’m not seeing the improvement that I saw last month. I feel just the same as I did from January on, aside from those few weeks when I felt a little bit better.

Yesterday I met with my Hodgkin’s lymphoma oncologist for my annual check-in. Even though it’s the current oncologists that regularly deliver bad news, it was hard to see her. On the lymphoma front, I’m fine. Seeing her reminds me of all the hope that I’d had when all this started five years ago that I would have cancer for only six months or a year and then everything would be OK. It was like when I visited the fertility doctor I’d consulted with before the lymphoma treatment to say that I was probably dying and there’s no point in thinking about offspring I wouldn’t be around to raise. It was difficult to see doctors who I had previously seen with so much optimism and hope.

We’ll see what the doctors say next week. Until then, I’m still doing my usual routine of IV fluids (through a PICC line now that my MediPort is removed) and host of supplements, as well as an added half-hour of IV antibiotics.

The doctors have been trying so hard to get me out of the hospital but the bacteria in my blood would like to stay. So far (knock on wood), I haven’t heard anything about my blood cultures, and no news is good news. If nothing grows, then I can get a PICC line in my arm tomorrow. There’s talk of release tomorrow. Maybe Sunday. A lot of things have to align for these things to happen, including getting my blood counts up. We’re already talking about trying to get my mom back out here another weekend when I’m not in the hospital, but based on this year, it’s hard to say when that would be.

Today was mostly a day of waiting and hoping nothing would happen on the blood culture front. Tomorrow, hopefully I can get the PICC line. (I can get one 48 hours after there’s no sign of infection.) Here are a few random things that happened:

Since I’m here all day and have a long medical history with which to regale future doctors, sometimes they ask if I’m OK with medical students asking me questions for practice. Today the student listened to my belly with her stethoscope and told the teaching doctor that it sounded “like birds chirping.” My bowels are a little more active than average, but they’re much more quiet than they were on Monday, when they were so loud the doctors could barely hear my heart over the ruckus. Apparently, bowels that are obstructed or that aren’t working very much are very quiet with some tinkling sounds.  I thought bowels would sound like a group of middle school boys making fart noises or a bubbling, festering swamp. I had no idea that bowels were so musical.

I called my insurance company about getting a wig, because I forgot what I was supposed to do after I started the Kafkaesque process of obtaining one. I found Aetna’s preferred wig distributor and then a local shop, and I thought my doctor is supposed to do something about pre-authorization. I told the representative on the phone that I was calling about a wig, and he really seemed to not know what a wig was. He initially tried to send me to pharmacy but then I realized if he’d asked me if it was medication, and I remembered it’s classified as equipment. During the rest of the call, he kept calling it equipment and at one point, he said it was part of a machine. “It’s a wig,” I said a few times. It didn’t matter that he thought it was a cog or something, because it didn’t affect the procedure I am supposed to follow, but it was weird.

My mom and I were talking about games, since we were playing Cantankerous Cats, which a friend had sent to me earlier this year to pass the hospital time, and I remembered the hospital recreation center. I’d forgotten about it since I was on isolation restrictions until yesterday. It was a beautiful day today, and I thought we could get out of the room and into the sunlit lounge. When we got up there, I realized that there is an outside roofdeck area with tables and chairs. It was pretty full since it was a nice day, but we found a few seats and at least got to enjoy the outdoors a bit. Today we were supposed to go to the Met so it wasn’t quite the same thing, but it was nice to get outside. Some people had cookies and fruit, so I think I missed some sort of snack hour, though some people brought food with them. I’m glad I remembered the lounge in time to get some sun, and hospital gown tan lines are probably OK this year since the “cold shoulder” look seems to persist for another summer season.

Something sad happened on the rooftop though. A carpenter bee had been buzzing around, probably attracted by a wooden pergola. I was telling my mom that carpenter bees burrow into wood but they’re pretty docile. We have some in our community garden, and they are enormous but fairly gentle giants. Suddenly we heard a stomp and a sad buzz. Someone didn’t like the bee buzzing and swatted it down and killed it. I was so sad. The poor bee was actually just minding its own beeswax. Male carpenter bees don’t even have stingers. It was such a sad and pointless death. It reminded me of a poem I read at some point recently: “Allowables” by Nikki Giovanni.

I killed a spider
Not a murderous brown recluse
Nor even a black widow
And if the truth were told this
Was only a small
Sort of papery spider
Who should have run
When I picked up the book
But she didn’t
And she scared me
And I smashed her

I don’t think
I’m allowed

To kill something

Because I am

Frightened

—Nikki Giovanni

Cancer. Cancer should be killed, but not carpenter bees. I have no deep parallels to draw or comments on meanings of the poem. I just don’t like the killing of carpenter bees (or spiders, if I can help it), though I’m not a homeowner so their wood burrowing doesn’t affect me. Still, I’ve come to enjoy their companionship in the community garden as harmless (to me) bees, unlike the some of the ground bees, who can be real jerks. Also, I think people should know more about the benefits of opossums, who are misunderstood.

The last thing that stood out for today was that I have been spying on my cats with my cat cam. Yesterday, my mom asked me if I wanted to say hello to my cat Ziggy, and when I said hello, he rubbed his face against the phone. He’s such a sweet cat and a complete ham. I watched him today on camera run into the room, and then does his thing where he pretends to find something on the floor. (This is a new ritual that seems somewhat related to his beloved “I got you” game, where he jumps out at you puffed up like a Halloween cat and then runs away, wanting you to chase him and then eventually get him and pick him up and cuddle him.)  Today, before my mom headed back to the apartment to feed the cats, I watched the bon vivant, Lux, march over to his food bowl, look at its empty contents, and then head over to the door and look at it for a moment to see if someone was arriving soon to feed him. He then sauntered off in disgust.

It’s been a days of ups and downs. I spend a lot of time waiting for test results. Often, especially lately, the results are not good, and I’ve taken to savoring the unknown time when I can still hope for the best case scenarios. It’s like after you buy a lotto ticket and you think of what you’re going to do with your winnings. I had a CT scan around 6 pm yesterday, with one of three scenarios.

One, if they saw an abscess, a source of continuing infection, then they would drain it. I would have  a drain for a few weeks and be on antibiotics.

Two, they don’t see anything and the blood tests don’t grow any more bacteria. Then it’s inflammation from being sick from the chemo and the antibiotics just needed a bit more time to kick in.

Three, there’s no abscess, but the infection doesn’t clear up. At that point, they would probably take out the MediPort to help the infection clear more quickly and then, after a few days, put in a PICC line to replace the port, with plans to put in the port again eventually.

I had hoped for option two with—just for fun—the fantasy of an added, “And you don’t have cancer anymore!” At first, things looked good—though not that good, of course. It looked like it would be option two, the best case scenario of no abscess and a clearing infection, though the doctors noted that the bacteria cultures still had time to grow. Since I so rarely ever get the best-case scenario, I tried to temper my hope that I could get out of here by Friday or Saturday or, at the very least, Sunday, before my mom has to return home.

Unfortunately, this afternoon, the doctors returned with bad news: Bacteria was still in my bloodstream. They slated me for a port removal in the afternoon. Since I’d eaten and hadn’t anticipated a port removal, they numbed the area with lidocaine and gave me painkillers (which are now wearing off and making me sleepy). While I was waiting for the procedure, they told me I no longer require isolation. This is good because people don’t need to wear masks, gloves and yellow gowns to visit me, but it also probably means I’ll be moved and won’t have my own room for much longer. I was allowed to remove my mask and robe before the procedure. The yellow fabric rips fairly easily, and I found the bow that my mom tied for me before I left under me. There was something heartbreaking about the bow, and while I handed over my phone and glasses for the procedure, I tucked the bow within my blankets. The removal of the MediPort didn’t take that long, just long enough for some ’80s songs from Dead or Alive, Taylor Dayne, Billy Joel and Depeche Mode to play.

The thinking is that the same bacteria has shown up twice in my bloodstream and though a blood test in between infections was clear, the worry is that bacteria can hide in the MediPort. The infection still needs to clear before I can get a PICC line to administer fluids and antibiotics at home.

It doesn’t look like I’ll be getting out of here soon, at least until next week. I’m so disappointed. While I’ve tried to find the good things, I’m getting really tired of being sick. The CT scan showed a small liver lesion, though I don’t know how the pancreas tumors look. It makes me wonder if the improvements I felt the last few weeks before chemo were imagined. I don’t know if this chemo is working and the PRRT is still not available. I’m not sure how much longer I can hold on, physically and emotionally.

A hotel reservation my boyfriend made for his London stay showed up in my Google calendar, and I felt like it was mocking me. Tomorrow, the day I took off to go to some museums with my mom, is supposed to be beautiful. I’m taking that personally as well. I can feel myself slipping into depression, though thankfully sleep is also arriving early tonight, cutting my pity party short.

Even through the mask, I could tell that the doctor’s news wasn’t good. My blood infection isn’t going away, and I’ll need a CT scan to see if there’s a secondary point of infection, like an abscess. They’re also consulting to see if I need to have my MediPort removed if it’s been exposed to too much bacteria.

I’m not getting out of here anytime soon. (And when I do, I might have a drain and will be on antibiotics for weeks to come.) Mostly, I’m upset about the timing of this since my mom is in town.

Yesterday I got a call from the doctor’s office to confirm a chemo appointment scheduled for today. “Don’t I have chemo every three weeks?” I asked, confused. “I don’t have chemo until next week.” The schedule did indeed say that I had chemo slated for today, so either I was confused or the appointment was wrong. I asked the scheduling person to confirm with my oncologist’s nurse and waited for a call back.

In the meantime, I did some calculations and mental rescheduling. I have a friend in town this week and my mom in town in two weeks, so the scheduling wouldn’t be ideal. However, chemo every two weeks would mean I would be done much sooner—by the end of June, in fact. I had just calculated my new end date and was looking forward to having chemo over with when I got the call that it was an administrative error and that I do have chemo every three weeks. They rescheduled me for next week. I was a little bit relieved but also a little disappointed. If this chemo works, then I’m not done until the end of July.

I’m often waiting. Five years ago, I was waiting for the end of my lymphoma chemo. Then I was waiting until after my stem cell transplant, then waiting to recover. I’ve waited for chemo rounds to finish, for hospital releases, for surgery recoveries. Then things will be better.

This time, it’s a little different. My cancer is more of a chronic disease. I won’t ever be done with this. But I’ve also learned that there’s no magic time when things will be perfect. Sometimes I’ve even looked back on the times when I was waiting for things to get better, knowing in hindsight that those times weren’t so bad.

I’ve often waited for something to fall into place, even before illness. It’s easy to think “once X happens, then everything will fall into place.” Once I’m done with school, once I have a relationship, once I get my finances in order, once I get in shape, once I meet this deadline, once I make more money…etc. Sometimes it never happens. A lot of times, it does happen, but by then, something else has come up. Things hardly ever fall into place all at once. When they do, I’m often too wary of it being a calm before a storm or worried the other shoe is going to drop. Though I try to savor it, I’m also keeping an eye on the horizon for gathering clouds.

This time, I’m going to try to enjoy the good days without focusing so much on an end point. I don’t want to jinx myself, and I have days when I feel a little meh, but I have days when I feel better than I have in months. Diarrhea for four months (one third of a year!) has been pretty rough. Savor your solid poops. The chemo has aggravated my neuropathy a bit, and I sometimes get a little dizzy and sometimes my stomach is off, but I feel as if I’m improving a little bit, and more importantly, it’s given me a little bit of hope for a window of wellness. I need to keep in mind that August isn’t going to be a magical end point.

With the chemo, I know I don’t feel well the week following treatment and then I progressively feel better until the next round. I expect, as with the other times, there will be cumulative effects so I might be a little run down by August. Plus there are the unexpected things like possible infections. However, I know that I should savor any time I feel better and that along with the low points, there hopefully will be good as well.

If you read my last blog, written during a weekend while I was tired and sick from chemo and showing no improvement, and then saw me later in the week and over the weekend, I would seem like a different person. I even felt guilty, as if I was in one of those old sitcoms where the person wears a neck brace in court after a traffic accident and then is caught in a lie when they’re carefree and frolicking later.

Through Wednesday I hadn’t been feeling very well, but something shifted that day. The unwell feeling was different, as if my digestive system was actually trying to do something for a change. On Thursday, I suddenly felt better than I had in months. In fact, I didn’t just feel a clearing of the chemo’s side effects of nausea, fatigue and pain, but my diarrhea subsided a little bit.  Though yesterday I stopped improving and felt a physical setback, but I hope it’s temporary.

Last Monday and Tuesday, I was avoiding small talk with people, and this weekend I was back to waving to neighbors and talking to community garden members. I had friends in town this weekend, and we went to the David Bowie exhibition at the Brooklyn Museum, met up with more friends to celebrate Record Store Day, then headed to the renowned pizza place in my neighborhood for a late dinner after putting our names in for a five-hour wait. (There’s always been a wait for this pizza, but it’s gotten progressively more ridiculous until its appearance on a TV show recently made the pizza so sought after that you have to get there before they open at 5:45 to put your name on the list to even hope of getting in.) The next day, we went to my new favorite pizza place in my neighborhood for the Grandma Pie, and we stopped in my community garden. We also ended our Bowie extravaganza with a stop at the Broadway-Lafayette subway stop, all decked out in Bowie. I was out and about in the world, and it was nice.

I got ice cream and then my guts, which had been feeling questionable, started roiling on the way home. At the very least, I have hope that it will subside and that I might improve after chemo next week. Living without hope has been difficult, so the glimmer of wellness has done so much for my mood. I’m trying not to get discouraged today. I’m also so cautious about being optimistic.

In other good news, the GoFundMe friends set up reached its goal, and I’l be able to pay the $1,000+ for the month of COBRA interim health insurance and continue to pay for some medications that insurance doesn’t cover.

I wore my Howard Jones “Things Can Only Get Better” shirt yesterday because of a Friday night discussion about him and because in my wardrobe of concert tees and black, it’s one of the most cheerful items of clothing I have. Hopefully, things are looking up.

The spring weather finally arrived, and there are so many things I wanted to do. On Friday, there were friends’ bands to see and restaurants to visit and people to hang out with. I stayed at home with my fatigue, aching bones, roiling bowels and chemo-induced indigestion. What I remember from the last time I took neupogen is that your skull is also bone, so I get headaches from my skull and jaw hurting.

Nothing on its own is that bad, but when it’s all going on at once, it’s enough to ground me for the night. I fell asleep on the couch a little after 9 pm while putting up photos of the one thing I was able to do— stop by the community garden to see my tulips and daffodils—up on Instagram, the phone still in my hand, jolting me awake a little when a buzz for a new comment appeared.

Yesterday morning, I headed up to the main hospital, where I was slated to receive a blood transfusion to boost my low hemoglobin. I was originally supposed to get a transfusion on Friday the 13th, an occasion that my inner goth girl enjoyed, but the hospital was too booked that day. On Friday, I got up at 6 am to do my saline infusion before work so I could possibly go out after work, but by 4 pm, I was having trouble staying awake. I had a rare free time without a needle in my port before placement the next day, and that always is a nice free feeling. I visited the community garden on my way home, a small consolation prize to enjoy the garden in the nice weather.

Either the chemo or the neulasta has been giving me night sweats, so after waking up a few times to change my drenched clothes and turn over my damp pillow, I got up early to make it to my 9 am transfusion. Some were getting a jumpstart on the first nice day in a long time, already in jogging clothes, coffees in hand. I remembered the joy of waking up early on a weekend for a workout, having the promise of a beautiful day stretched out before me. I tried to find that hopefulness, but it eluded me. Once I was called for my blood test, I waited for the results to determine if I needed the transfusion. I sat in the waiting room, remembering being wheeled by these suites as an inpatient during radiation and for tests, looking at the outpatients nibbling on graham crackers and sipping coffee, allowed to exist in the outside world.

By 10 am, I was told I didn’t need a transfusion after all, but because of weekend train construction, the usual train I would take wasn’t running downtown, and the other train I would take was running on an alternate line, so it took a few trains and buses and an hour and a half to get home. My little trip uptown zapped my energy for the day. On the last few buses, people were geared up for the day, heading to the parks and outdoor destinations, and I realized I had nowhere to go but back home to bed. I felt bitter. I passed a storefront that once sold funny items and a rubber chicken purse around my first round of chemo five years ago. It now houses a fancy relaxation store that urges passersby to rest with pricey good-smelling mixtures. It is the rest of well people, though, of companies that offer “wellness” as a brand, and for people to take breaks from their busy lives, not for people like me, who feel fatigue in their bones. It’s rest for the living, not the dying, who will have rest soon enough.

When I got home, I changed into my sleep diaper (just in case) and slept for more than an hour, then ate lunch and then spent the rest of the beautiful afternoon sleeping. By the time I woke up, there was a chill already settling in the air and by the time I put on real pants, I was too tired to walk for ice cream, so my boyfriend brought me a festive milkshake dotted with sprinkles home for me. I watched TV for a few hours hooked up to my IV before falling asleep again, getting up several times because of the nightsweats but too tired to change to dry pajamas.

Today is a gray day, and it’s been easier for me. I read a really great book by the friend of a friend, a fictional story about a little boy who dies of cancer because sometimes I just want to read about death and cancer. This weekend, I didn’t feel like I was part of the world anymore. No matter how much you can try to be optimistic or how much kindness people show or how much you or they try to cheer you up, being sick and dying is hard and it’s a lonely business. I owe people messages and emails and phone calls, but I haven’t had any energy all weekend. I haven’t even been able to make any progress on my end-of-life checklist and plans.

This weekend was one of the hard ones, as I watched people make plans, as I was too exhausted to engage with the world beyond books or TV. I’m tired of living like this, and I’m impatient to either get better or die. Sometimes the tedium of hooking up another IV or pulling more Immodium out of a blister pack seems like it’s too much to bear. This world doesn’t have much for me anymore and I long to be free. Sometimes, there’s not anything anyone can do and you just have to give in and cry and acknowledge the sadness.

Yesterday found me back in the chemo chair at the Brooklyn infusion center, and I returned today for my etoposide. The center is fairly close to me but requires two buses to get there, so getting there takes anywhere from a half hour if the bus schedules align to an hour if they don’t. I usually end up walking the second half.

Back in the chemo chair.

Before I went, I voiced my doubt to my oncologist’s nurse. “I’m starting my carboplatin and etoposide chemo today, and I have a question for the doctor,” I wrote. “I had both for my augmented ICE for the lymphoma, and when I was done with those two rounds, the pancreas tumor (which was thought to be lymphoma or inflammation at the time) was still there. Is there reason to believe it will work this time? I’m so discouraged but I know we’re running out of options.” The nurse called me back, and she told me that, as I noted, we’re running out of options, and the doctor thinks that this is worth a shot. I agree, and I know they wouldn’t try something if they didn’t think it would work.

However, my cancer just keeps surprising everyone in the worst ways. The doctors were surprised that the tumors came back this summer, they were surprised that the radiation didn’t work, they were surprised that the liver embolization didn’t ease the symptoms.

So far, the chemo seems to have aggravated my diarrhea, as the Dacarbozine did. I hope this is just temporary. Things are happening in my digestive tract, and I can’t tell if they are good or bad, or perhaps they mean nothing at all.

Today I returned for a half-hour infusion and to receive my Neulasta injector to deliver neuopgen “to help reduce the chance of infection due to a low white blood cell count.” I took it in shot form when I was harvesting my stem cells for the lymphoma stem cell transplant. It causes a bit of bone pain, but as I recall, it wasn’t that bad. Fingers crossed.

I was thinking I could use a happy surprise. I buy a lotto ticket every now and then. But honestly, I have had an avalanche of happy surprises. My bootcamp friends set up a GoFundMe (which is temporarily down since it was flagged for the words “opium tincture”) but it will cover the COBRA payment to continue my coverage while my domestic partner made a job transition, with a bit left over to put towards medications my insurance doesn’t cover.

My current insurance doesn’t cover a wig, but I’ll get one only if my new insurance covers it. I stayed bald last time, and I’m getting used to my new extremely short ‘do. I also have an asymmetrical purple wig from Ricky’s if I need some hair. If this chemo works, I’ve already decided to be Annie Lennox for Halloween.

Three of my best friends visited recently for several days. We caught up and reminisced. My Sound and Sense, a book I’ve had since AP English my senior year of high school, went to Ireland with my friend who is a teacher. In it are scribbled notes from me to her and to another friend when we shared the book, along with actual notes from explicating various poems. While they were here, a fitness bootcamp friend who now lives in Chicago dropped by, and my apartment was full of laughter and friends from different times of my life. More friends are slated for visits in the upcoming weeks—people I’ve known from Ohio who now live in Washington D.C. and in Seattle.

One of my half-birthday pals sent me a cool dragon cards, and another friend sent a care package off activities and artwork she thoughtfully put together. It seems as if one of my cats fell in love with the cat pencil case that she sent or with ’80s Howard Jones. I can’t tell, but he snuggled with all the gifts. A Chewy delivery of cat food arrived and we momentarily worried that the cats had figured out how to order from the internet, but a card the next day arrived from a friend’s mom. I’ve received such kind notes and words of encouragement through email and social media. Yesterday to raise my spirits, one of my friends wrote a series of poems about cats that she called catkus.

Tomorrow I am slated for a transfusion to boost my low hemoglobin. I had a transfusion at the hospital as well, when a friend was visiting. We are both former goth girls, so there was something very goth about sitting around with a bag of blood.

Despite battling gloom and pessimism, it’s hard to completely extinguish a little bit of hope.

I start my carboplatin and etoposide today, and then have another round tomorrow. It’s slated through July as there’s no telling when the health insurance companies will be done with their negotiations to make PRRT available.

I’m not afraid of the chemo or the low blood counts or the bone pain. It’s all old hat to me now. I’m afraid that it won’t work, because these drugs haven’t worked for my pancreas tumors before. I had carboplatin and etoposide as part of my augmented ICE before my stem cell transplant for Hodgkin’s lymphoma, and at the end of that treatment, my pancreas tumor (which was thought to be lymphoma or inflammation at the time) was still there.

Reading my old blog post and seeing the decision to skip the pancreas biopsy years ago gives me mixed feelings. I don’t think knowing that it was a neuroendocrine tumor would have done anything as far as treatment; the doctors probably would have watched and waited and I don’t think it would have affected the outcome. And ignorance was bliss. I enjoyed thinking I was cancer-free for that year and half.

There is a nagging feeling that this won’t work and that hanging my hopes on the new treatment is also foolish. I don’t know what else to do, and options are running out. I have an appointment for a consultation with Mt. Sinai in a few weeks to see if their center for carcinoid and neuroendocrine tumors has anything for me. I have been disappointed too many times to quell these doubts. At the very least, I was afforded a little bit of hope when a future without hope seems too much to bear.