Changes

It’s been a little over a week since the PRRT treatment. I’m feeling a lot better. For the first time since late April, I’m feeling hopeful again. I got my MediPort in and am getting my PICC line out next week. The doctors have taken me off daily hydration, so I am doing my IV only every other day.

I’m now planning some summer getaways and maybe even vacations. It was much cheaper to plan for vacations in early spring, when I was sick, so I am probably going to wait until off-seasons return and hope that I feel better. I went to a cancer support group tonight, and one of the things that kept coming up is how hard it is to plan. You’re uncertain about your health. What if you get sick again?

The second reason it’s hard to plan is superstition. If you do make plans or let your guard down or allow yourself to be happy, you could be setting yourself up for disappointment. There’s often a feeling you’re inviting illness back. Since I’ve had cancer, I felt that way, and I don’t think I realized how common it was among other people who have been through it. Once you’ve had the rug pulled out from under you, you’re understandably jumpy.

At one point though, I noted all my rugs had been pulled out. And I’m still OK. Some of my biggest fears were realized. I’ll always have cancer. A long-term relationship ended. And here I am. So maybe I’m not going to worry so much anymore.

One of the things I’ve always found strange about a breakup is how someone goes from being a stranger to someone you’re extremely close to and then back to a stranger. Their stuff is in boxes. You see them in new clothes with new people. Sometimes it happens with the end of a friendship, but with the end of a relationship, it’s such a divide. Together, then not. Close, then strangers. In some cases, you realize you never knew that person at all.

The cats are enjoying the boxes in the apartment. I may just rent part of my apartment as storage space for extra cash and so the cats can still have boxes to play in. Ziggy loves to eat tape and Lux enjoys tearing apart cardboard, so I’m not sure that my storage facility would be very popular.

Within the past week, I’ve been to a meditation and the support group, as well as a hypnosis workshop for cancer patients. I was a little cynical going into it, but I think it actually worked with curbing some negative thoughts. I definitely felt better afterwards. I’ve also been doing some fun things—hanging out with friends, a comedy show, a summer solstice celebration in the community garden.

It’s also the start of summer, my absolute favorite season. Summer also brings a lot of free activities, and I love free things. I love hot dogs and yoga in equal measures, and both are free in Brooklyn Bridge Park. Last summer, I could take the weekly morning yoga class then take the ferry to work. I’m looking forward to the summer.

MediPort, Part 2

I am getting a new MediPort today, on the left side of my chest, because my previous port was on the right side, before it was removed last month during my blood infection.

I actually prefer my PICC line but I am hoping that I won’t need daily hydration IVs. The port will leave a bump in my chest, and if I could not have the needle access all the time, it would be less bulky and painful. I could maybe even have somewhat of a normal summer if my symptoms stay away. I keep campaigning to end the IV fluids.

Right after a pep talk I gave myself yesterday to embark on a new life, I promptly fell down the stairs while wrestling with some bags. (I have been staying away from my apartment for most of his packing.) It happened in extreme slow motion, so I miraculously didn’t break anything. I ended up with scraped up legs and knees and a twisted ankle as I sat dazed on the steps that smell of urine. (It’s urine season.) I hope they can fix my ankle while I am out for this procedure.

On a more serious note, I feel really bad when I have to come in for procedures. I feel so abandoned and alone, even though he wasn’t always here. I cry the whole time the nurses ask me questions. It’s so silly. It will get better. There is something so lonely about having this stuff done now.

I am looking forward to hopefully a summer of more normalcy and fewer infections. In the meantime, I am going to watch this in depth discussion of Gigi Hadid and Zayne and the Lee family and ponder how you get a gig commenting on celebrity gossip.

Now What?

Friday night, I dreamed I was an on upstate train with my ex, who was a few rows in front of me. I had fallen asleep and woken up back in New York City, and I searched the aisles frantically, because I hadn’t said goodbye. I woke up unsettled, in that way you are initially relieved you’re not in that exact situation but still dimly aware that your subconscious is disturbed in some way.

I have moments when I am unbearably sad. The months ahead will be trying.

Mostly, though, I think it will be trying for my poor friends. I will be a pest, asking others how they got through it. I have seen friends through breakups and it seems like there’s a lot of sadness and distraction. There’s also whiskey and rebounds, which aren’t options to me. Well, maybe a little whiskey.

Time. Time keeps coming up, and I don’t have much time. I don’t know how much time I have. Who does?

All time I have must be savored. No pressure. Yesterday was a beautiful day and I couldn’t afford to waste it, yet at one point I also felt like my heart was too heavy to move. I felt as if I got up, my chest would fall into the table in front of me and pin me down. I called some friends from my friends’ backyard, and we commenced lifelong conversations about how to get through this life. I laughed. I’m going to make sure that I laugh every day still.

My time seems especially limited and precious yet I want to fast-forward through this actual time of feeling physically OK—almost normal, even—to get past this heartbreak.

Oh, that’s right. I’m feeling OK. I feel the best physically that I’ve felt since January. Throughout this past month, I have been feeling increasingly better as I recovered from the blood infection and put the chemo behind me. I expected to feel sick this weekend, and I still feel OK.

Obviously, I’m overjoyed to feel better, yet I feel I’m not appreciative enough since I’ve been so preoccupied with my stupid broken heart. This was the point that was supposed to happen in late January or early February, after which I’d plan vacations and getaways with my significant other at the time.

I can still do that, of course, except my companions will be different. I have so much joy in my life still and so many people with whom to share it.

Yet sometimes I wonder how I can move forward when sometimes I feel like I can’t get out of bed. I’ve been cheering myself by writing in a friends’ backyard, but I feel as if I’m the crying neighbor in Under the Tuscan Sun. I’m the quirky lady that comes with a Brooklyn apartment, a balding woman seen weeping at her laptop.

This week I have a port placement again. My MediPort was taken out in May in case my Klebsiella was lurking within, and I was given a PICC line instead. I actually prefer having the PICC line instead of the bulky needle in my chest with the MediPort; however, if I can get to a place where I no longer need daily hydration (fingers crossed), I won’t have to keep the MediPort accessed. I’ll have a weird bump in my upper chest, but I hope to be able to go to the beach and do normal things and have as normal and beautiful a summer as possible. I’d like to travel.

I’d like to find a purpose in life. I have had this nagging need to have a George Bailey moment and make big positive differences in people’s lives while I can. I haven’t been able to volunteer because of my erratic health schedule, but I’d like to try to figure out how to best help other people who also are hurting or need help. I’m joining cancer support groups so I can find new people to annoy. I’m going to try to take stock of what I like in my life and the things that don’t serve me and get rid of those things. I’m going to make a lot of mistakes, I think, and I’m going to feel embarrassed and silly.

So far, there’s good news so far on the health front. If I let it, that optimism could spread to the rest of my life. (I’m still a pessimist at heart, though, so we’ll see.)

 

PRRT

I’m radioactive. I actually have to keep people at arm’s length for five days so I have to be somewhat isolated. It’s a weird time to do so when I’ve been asking for more support than ever.

As a mosquito flew by my face Wednesday evening, I wondered if it bites me while I’m radioactive, if it would die or turn into a superhero mutant. Half-asleep, I wondered if I should phone the on-call oncologist. I learned yesterday that I was the first non-clinical trial patient at Memorial Sloan-Kettering Cancer Center to receive the Peptide Receptor Radionuclide Therapy (PRRT) treatment. If I did call, would they would just stop offering this treatment in the U.S. immediately? That’s it: We can’t have nice (neuroendocrine-tumor-blasting) things.

From my understanding, the cancer cells have receptors for peptides, and this is how octreotide, a synthetic hormone I already inject three times per day, works to combat (somewhat) the diarrhea-inducing hormones produced by my rare VIPoma tumors. The PRRT works by combining the octreotide with some radioactive material. The tumor welcomes the octreotide, which acts as a Trojan horse, escorting the radioactive peptide into the cells and treating the tumors from the inside. The destruction of some of the cancer cells may cause even more release of the hormones that are causing the diarrhea and other side effects, so it’s likely I may feel even worse for a five to seven days, as I did after the chemo. (Hopefully this doesn’t mean any blood infections. Twice earlier, the increased symptoms have caused klebsiella bacteria to sneak from my gut into my bloodstream, especially because of the rerouting of my digestive system after the Whipple procedure.)

This won’t cure my cancer and it might not even shrink the tumors, but it’s aimed at controlling these symptoms so I can have at least maybe six months of normalcy. I’ve also been feeling a little bit better after the two rounds of chemo I had.

Wednesday morning, I went to MSKCC’s Nuclear Medicine department for my first round of PRRT (Lutathera). I spoke with the doctor and had everything explained to me once more, including the short-term and long-term side effects. Treatment is once every two months and I am slated for four courses of treatments. I also will do bloodwork every two weeks. (Also, some good news from last Friday’s bone marrow biopsy showed no myelodysplastic syndrome, something that I am more at risk for after all my chemo and previous treatments.) If the bloodwork doesn’t look good enough, there’s a chance the treatments may be rescheduled.

In addition to the half hour of Lutathera, I also received anti-nausea medication, as well as four hours of amino acids to insulate and protect my kidneys from the radioactivity, as well as Decadron for a boost. One of the lumens in my PICC line was blocked, so I was unable to do my hydration in the morning, so I also received some fluids.

Since I am the first patient at MSKCC to receive the PRRT as not part of the clinical trial, a few other doctors were there to observe, including a doctor from the Treatment Center Rotterdam, where this treatment was developed.

As much as I wanted to stay awake for my first round, I kept falling asleep during treatment. I was physically and emotionally exhausted. I have been too upset to get a good night’s sleep most nights, but this week, I also had an old friend in town and we stayed up late talking one night, so it was nice to have a happy reason for sleeplessness.

The good news is that amid my infusions, I was taken for a scan, which showed good uptake in the pancreas of the Lutathera. I hope this means that the treatment is effective and I can buy some months of normalcy in my life. After the break from chemo, I have had some physical normalcy and strength return.

Emotionally for the past three to four weeks, I have good days and bad days. Wednesday was a bad day. I felt like battles and wars were being waged in my body and my mind, and I was just so tired. I fell asleep while nurses spoke to me.

When they asked if I have anyone at home, I broke down in sobs. If I could magically stop being so sad, I would. On Friday, I cried so hard at my bone marrow biopsy appointment, I got a hug from a stranger and another from the nurse who took my blood. When the nurse practitioner for my lymphoma doctor asked me how I was, I started crying and got a third hug.

I’m not supposed to sleep next to anyone for the next five days, so it is perfect timing. After 12 years, my boyfriend and I broke up. I have all the breakup emotions: I’m sad. I’m angry. I’ve been asked to not be so public about our split, so I’ve been trying to straddle the line between asking for necessary help with both practical support (doctors’ appointments, places to stay) and emotional support. When it comes to emotions, I overshare. I have this blog in which I overshare regularly. I’m trying to respectfully share only my own stuff and not those of other parties. Things are complicated.

I am not a woman of calm dignity. I wish I were. This is who I am: I am messy and emotional. I am going to cry every day for months. Since I try to hold things in, I cry in front of strangers in public instead.

I can’t do a lot of the post-breakup stuff. I’m balder and even more funny-looking than usual. I can’t work out. Khloe Kardashian is not going to contact me about a revenge body. I just want a body that doesn’t have constant diarrhea. (And that looks like it is happening! I mourn my loss of core strength but every night without a diaper is a sweet victory.)

I can’t drown my sorrows and indulge in other self-destructive behaviors, although that is probably a good thing. However, recovering and being somewhat isolated allows me so much time to sit around and feel sorry for myself and cry radioactive tears. I have to specially quarantine and throw away wads of tissues. I suppose that’s incentive to pull it together right there.

So. I’m 40 and I have cancer and I thought I’d be facing the the last year (or years) of my life alone. This is something that happens to other people. But I’m not alone, not at all. So many people have reached out and have banded together and filled my life with so much love lately. I just need to get through this.

Breakups take so long to get over though, especially for me. When I went through a friend break-up years ago, I cried every day for almost a year.

I don’t have the luxury of time, though. I have this six months of treatment and then I have maybe about six months of feeling well. As soon as I am OK from this, I think then I’m scheduled to die or get sick again. This isn’t a normal situation. Sitting around being sad isn’t an option.

Instead of thinking about how long I’ll be sad and when and if I’ll stop hurting so much, I need to focus on all the positives I still have.

I try to remember what I learned from previous breakups: Don’t let this ruin things. I’ve had really good things happen during post-breakup times and there’s always a cloud of pain and gloom that surrounds them. Actually, looking back, I think I mostly ruined things for other people with my long face and constant babbling about my broken heart. Ugh. I completed my third (and final) bucket list item of going to Roosevelt Island—by ferry, by train, and by tram. I watched Dark Water that evening with a view of the island in the background.

Some people disappear from social media during breakups but not me. I’m on social media all the time: What is going on? What is everyone doing? Anyone want to hang out? Does everyone want to hear about the boring minutiae of my life? No? Too bad.

In the meantime, even while I badger everyone into hanging out with me, I can assert my independence. Redecorate the apartment when I have the energy. The doctors keep talking about sending me home with things, and I feel like I don’t have a home. Not my own, not quite yet.

I can’t be left alone with my thoughts for too long. I used to be somewhat obsessed with working out, but in this dried out, ill husk I am left with, I need a new hobby. I am signing up for meditation. I am going to all sorts of support groups, like Helena Bonham Carter in Fight Club, though I am probably more of an Edward Norton. The difference is these groups are relevant to me: metastatic cancer groups, young people with cancer (though I just aged out in October).

I am raw and emotional. Low-res memes with trite sayings currently speak to me more than they should. I need to do things to keep my mind occupied. I was raised Catholic; I could join a nunnery. I like wearing black and I would have a head covering. I have a shorn head; I could be a Buddhist nun. I am susceptible to suggestion and I don’t want to think about things. I would join a mild cult, but only if  matching outfits/robes/tunics were mandatory and it didn’t involve fasting. If you have wanted to suggest something to me, now is the time to do it. 

Though I have to keep people at arm’s length, animals are OK to snuggle with so my cats and my friends’ dogs are safe.

Some aspects of independence are less appealing. I have to wash my own clothes I wear for the next 10 days myself. This may be the worst part as one of my greatest joys of living in New York City is the ability to send my clothes out to a laundromat and have them returned to me washed and folded.

With all this radioactivity, I’m hoping for superpowers. The first one I’d like is the ability to get over breakups immediately. I want to become a better person, not a bitter person. I want to actually be a good person. Sometimes that seems like that would take superhuman strength.

I want to be able to move forward and look forward to the rest of my life as a time of peace, surrounded by people I love. I have to make every day count. I worry I am going to actually become a generator of low-res meme sentiments. Some days I’m like Kelly Clarkson in the “Since U Been Gone” video and other times I’m more like mid-aughts Britney. I’m like Mary-Louise Parker in her “Dear Mr. You” essay but less angry and more sad.

Mostly I’m me. Or I’m becoming me again.

Sometimes I don’t know how to move forward. If you have been through something difficult, how have you done it? This seems like the hardest place I’ve ever been in my entire life. Even full of radioactivity and the residual intravenous steroids, I worry I won’t have the strength that I need.

This isn’t an ending. It’s a new beginning. (Low-res meme coming soon.)

In the immediate future, I think I am taking it easy this weekend and seeing if the VIPoma makes me sleepy and tired.