A Pain in the Neck

What would you do if you found out you had a year before you probably got really sick?

I met with the PRRT doctor at the nuclear medicine department at Memorial Sloan-Kettering today. The doctor explained what the regimen would be and how it works: it sounds like treatment is four and half hours that includes the PRRT, as well as something to protect the kidneys, every two months for four cycles.

The way that (I think) the PRRT works is that I’m given octreotide, a hormone I already take to try to curb the symptoms to combat my VIPoma tumors. The cancerous tumors have octreotide receptors, and when the cells bind, a radioactive peptide emerges, like a Trojan horse, and kills the tumor cells. However, when this happens, the VIPoma, the cause of the symptoms (particularly the diarrhea) would also be released and my symptoms would get worse for several days. I would be radioactive and have to avoid pregnant women and small children for a few days. I would set off detectors while traveling and would have to carry a card.

PRRT is finally available in the United States, though it’s been available for years in Europe, Asia, and Australia for awhile, so even though it’s a new treatment here, there’s quite a bit of data on it. My type of tumor (VIPoma), however, is very rare, so there’s less information about that. I think the doctor told me it’s effective in about 60 percent of cases. It doesn’t cure the cancer, but it often shrinks the tumors or keeps them at bay enough to stop the symptoms. People tend to have relief from symptoms for an average of three years. But—there’s always a “but,” especially when it comes to me—according to the tests that measure Ki-67 markers, my tumors are very aggressive. If it works, I would probably have about six months of relief.

I had thought that I was finishing the chemo cycles that remain, but it seems as if I’m going straight to PRRT. I’m slated to start the PRRT treatment on June 13. I’m getting a MediPort again on June 18.

I was supposed to have chemo tomorrow, but my blood counts are too low. The doctor said that the low hemoglobin is not related to the chemotherapy, but I’m not sure what it could be related to. I was very short of breath on Friday, but I was so upset and tired that day, I didn’t think much of it. I’m a little worried that the low counts may also put off the PRRT, which can cause some bone marrow damage.

Among the pros: PRRT causes limited hair loss so I’ll be a swarthy lady again soon. I’ll be able to travel, but I’m still limited by my access to fluids as I need them. (This weekend, I went up to the Hudson River Valley and needed help hoisting my suitcase to the overhead space because I had to transport three bags of saline. My IV pole is relatively compact but didn’t fit in any of my bags.) Also, I picked up my opium tincture at the pharmacy and my insurance now covers it; though it’s still $65 for a relatively small amount, it’s better than $125.

I think it’s the last thing they can try. After the PRRT, I’m not sure what would happen. I guess I would be sick again. Doing the math, I would have about a year, but that also includes treatment. I’m going to say that I have only a year left, because that means I will live forever. Maybe I’ll find a reason to hang on for longer, like if the last season of Game of Thrones is delayed. (I don’t want my ghost to haunt the offices of HBO because I don’t know who sits on the Iron Throne.)

It’s both longer and shorter than I imagined. I thought I was going to die in January. And now I might—if it works—have six quality months and six months that are OK.

It’s weird to know when things might end. (Spoiler alert!)

Of course, there’s always the unexpected. Don’t say I could be hit by a bus tomorrow. That is extremely unappealing. And unlikely, considering how slow they are. I was late to my doctor’s appointment because I had to wait 20 minutes for the bus.

Speaking of buses, I had a very short, attainable bucket list. It was about three things. The B61 bus would do a loop and go by the old location of Rocky Sullivan’s bar in Red Hook, then go to IKEA, and then stop near the bar again on its way to towards downtown Brooklyn. I always wanted to get off the bus, do a shot at Rocky Sullivan’s, and then get back on the same bus. I achieved this feat several years ago, though I wouldn’t recommend running down a block with a belly full of whiskey.

There is a restaurant in my neighborhood that offers a personal pizza for free with the purchase of a draft beer in the bar area, and I also did this a few years ago. (And the pizza is really good and of substantial size, and we also received garlic knots.)

The last thing is to go to Roosevelt Island. I’ve had a strange obsession ever since I moved here and had a car and would see the ruins of the tuberculosis hospital at the end of the island. My first gym was at 59th street near the tram. I would like to have a whole Roosevelt Island day with the tram and maybe the ferry, followed by a viewing of Dark Water, which takes place on Roosevelt Island, even though I can’t watch horror movies.

Really though, this is pretty good news. Hopefully I can get some answers to some of my questions tomorrow.

Yesterday, I was out with a friend and I had a little bit of trouble catching my breath. I wondered if I could actually feel my heart breaking. I think I just needed potassium, which is less melodramatic but extremely important.

I came home to a lasagna dinner and oatmeal cookies made by some garden members who put together a meal train. I came home to so many messages of love and support. I can’t be alone right now and have arranged not to be. I go to some pretty dark places emotionally and I know when to ask for help. I am worried about dying alone, but everyone has been so kind in assuring me that I’m not alone. I get so sad when I think about going to urgent care alone. In the past 24 hours, I’ve shed so many tears of sadness, but of gratitude as well.

I know I have been burden to everyone, especially those close to me. It means so much to me that everyone has been so kind. Sometimes I feel guilty, as if I don’t deserve all of this.

I used to love being alone and independent. I hate that illness has taken it away from me.

I want to be well again. I want a break from cancer. Sometimes I forget. I thought about trying to go to a pool and then I realized I have a PICC line in my arm. I had forgotten for a minute that life has changed. It continues to change.

The PRRT might actually give me a respite from the effects of this disease, but if it doesn’t work, that’s all they can do. That’s scary. I am so scared and so hopeful. I am savoring this hopeful time, because I know it’s limited.

Earlier this week, I took a short break from Facebook. I didn’t announce it, because often when people say they are taking a break to clear their heads, they’re back within days. (Like me, but it’s OK because I didn’t make an announcement! That is what I tell myself.) Also I don’t believe in denying yourself things that give you joy, so I don’t do cleanses or dry Januarys. Eat! Drink. Be merry! Do everything while you can.

When I eat hard candies, like the sourballs they have in a bin at Sloan-Kettering, I savor them for less than a minute before I chew them up. I feel like I’ve been trying to do that with good things these days. I am too eager and grasp at them.

My social media break, by the way, lasted three days. I don’t think I cleared my head at all. And I need social media right now to remind myself that good things are still happening. Terrible things are happening too. My sadness is a blip. Everyone keeps telling me that it’s going to be OK. I keep telling myself that over and over.

The sadness has been taking a physical toll: I can’t sleep and my neuropathy has flared up, and it’s been a reminder to take care of myself.

I know it’s within me to make things as OK as possible. I am trying to let go of a lot of bitterness and anger, but it’s hard. Several people have recommended to figure out what makes me happy. I am trying to seize the moments of goodness. I’m trying to remember the good without the bad.

I have spent some time looking back and thinking, what if? What if? I can’t change what has happened. I need to move forward and try to believe that everything is going to be OK.

Last week, during a particularly rough afternoon, I counted out how many days (72) and weeks (10) I had before I would be done with this cycle of chemotherapy. This week, those numbers are pretty much the same. When I went to my doctor’s appointment on Wednesday, my blood counts were too low to receive chemo. I got a shot of Neuopgen to boost my white blood cells, and chemo has been rescheduled for next week.

I had hoped with chemo I would be able to have more of a schedule and be able to plan a bit better but with my surprise hospitalizations and delays, that doesn’t seem to be the case. The good news is that PRRT may become available soon, so I am meeting with a doctor on Tuesday.

Also my personal life has been falling apart since October. It’s OK in the grand scheme of things, but something surprised me so much yesterday, I don’t know what to do. Yesterday I cried on the train, which I find very cathartic. (It’s grieving alone yet among people.) I want to run around in circles and rip out my hair (but it’s too short go get a good grip and so much is already gone) and then go out into the middle of the street and scream because that’s the only response that seems to make sense. Once my vocal chords are raw, and I am physically exhausted, then I would sleep for several weeks until maybe things made sense.

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.