More Delays But Finally Answers

“Millions pray for all we take for granted.”

A friend posted this the other day, amid the updates about the crisis in Syria, and I have been trying to keep this in mind when I find myself sliding into a pool of self-pity.

Chemo has been postponed one more week so my shingles can resolve. Yet the news is good(ish). After weeks of numbness, nerve pain and a strange lightheaded and dizzy feeling that I was fairly certain was an ingrown twin gnawing on my brain from the inside, I have been told my symptoms are probably all been related to shingles. My blood has been examined, I have had brain and spine MRIs and I had an EMG test, so I am relieved that even though I still feel pretty bad, everything looks pretty normal. Though it could take months for the shingles symptoms to go away, there probably isn’t lasting nerve damage.

I finally have some answers after two months and two ER visits, and so many appointments. Though the shingles rash showed up only a few weeks ago, it’s possible my symptoms dating back to October have been related to that. I have had some alarming symptoms over the past four years, from lymphoma tumors in my chest to the painful pancreatitis from my neuroendocrine tumor, but the numbness and nerve pain has freaked me out more than anything. The rapid decline in mobility and comfort has been the scariest thing. After improving for a bit, the nerve pain and twitching got worse this week, but the doctors say this is normal. I have an anti-convulsant called Gabapentin that I can take, but I have been avoiding it because it can make you spacey and wobbly, both of which have been already been side effects of the shingles for me.

I am actually looking forward to starting chemo on Tuesday, once I am done with my shingles medication. I feel like it will give me permission to take it easy. As I always do, I have been trying to cram everything in before chemo—from fun things like seeing people and having last hurrahs to things I need to do like errands and cleaning—and I think I wore myself down a bit when I need my strength for the coming months. As always, I feel a bit desperate, as if I’m trying to suck the marrow out of life before the unknown. Though the treatment doesn’t seem as bad as my previous chemo, I have a new nagging thought: What if I never feel better?

Though my boyfriend reminds me that it’s possible, it’s unlikely that I’ll ever be “cured” of this cancer. When doctors talk about living with a disease, the flipside of that statement is the pessimist’s view that living with a disease means you’ll eventually die from it. Some people say you don’t know what will happen, and this is true, but alternatives I can think of sound even less appealing. I could get run over by a bus. No thanks. I’ll take cancer. The doctors say I could have decades left, but I also worry about what I’d leave behind and what I thought I would do in my life that I haven’t (and most likely won’t). I find myself nostalgic for when I was recovering from the stem cell transplant and when I was recovering from the Whipple procedure, as physically tough as those times were, because I felt I had more hope. I still do, sometimes, but it’s slippery and harder to grasp these days. I hope that the side effects from the shingles clear up and I stop being so twitchy and weak, and the nerve pain finally stops.

Some chores make me sad, like cleaning the bathroom and doing the dishes. It makes my mind wander to dark places. My grandma would sometimes get depressed by ironing. Some tasks take your mind to regrets, missed opportunities, nagging worries. I was doing the dishes earlier, blubbering to myself and inexplicably repeating, “I don’t want to die.” Some chores, however, are the opposite, perfect for therapeutic reflection. Gardening makes me happy. A few weeks ago, I planted some bulbs in my community garden plot. It’s always an act of optimism, putting the bulbs in the ground and hoping for beautiful flowers in the spring. The year of my transplant, I missed the flowers when they bloomed in April but people sent me photos. I’m nervous as to what this spring will bring. As I planted, I thought about accepting limitations and found some peace with my latest diagnosis. I thought about the trying to grapple with the unexpected and accepting things as they are.

When I got home, as I threw away the bags that the bulbs had been shipped in, I noticed something. I had ordered some daffodils, as well as three types of tulips—one white and the other two in pastel shades so my garden plot would be full of complementary colors. When I opened the box in the garden, I had noticed that the description of one set I had ordered—a variety of soft purples and pinks—were described as “orange with purple flames.” Eager to get the planting done in the chilly December air, I hadn’t paid much attention. Then I saw a note attached to the bulbs: The company was out of the bulbs I’d ordered so the nursery had sent me these instead.

In the spring, orange tulips with purple flames will bloom among my soft pastels and white tulips. It is not what I planned, but it will be beautiful still. It was a perfect lesson for the day. I hope I can apply it beyond the garden.

Answers But Mainly Questions

The good news is, despite so much evidence to the contrary over the years, my brain appears normal, according to Thursday’s MRI. Relieved, we headed home from urgent care, and the next morning I went for a spine MRI. I am awaiting results with that familiar feeling of anticipation and dread, worried what it might show yet also worried it might not give any answers.

I feel myself becoming desperate—for answers and for hope. For four years, I have been trying to hold it together, through the lymphoma, the stem cell transplant, the first neuroendocrine tumor and the Whipple procedure, but now I feel as if I just can’t do this anymore. For the first time, I feel as if I’ve lost hope. I have been trying to continue on as normally as possible while trying not to do any physical activity that aggravates the nerve and muscle pain. When I do get a muscle spasm or, like today, pains deep within my calves, it’s not so much the physical discomfort as the sheer panic of not knowing what’s wrong (or what I can do) that bothers me.

On Friday, I called my oncologist to see if the numbness could be related to something my general practitioner brought up: paraneoplastic syndrome. It’s rare, but then again, so are neuroendocrine tumors, as is having two unrelated cancers at the same time. (I bought a lotto ticket in case my penchant for crazy odds could be in my favor, but yet again, no such luck.) The symptoms can include peripheral neuropathy and shingles after what appears to be a cold, and that all fits, though that is from my Googling and I really have no medical knowledge. I’m trying not to fall into an Internet hole reading about how the neuropathy is often irreversible, though it seems as if treatment for the underlying cancer can help. Unfortunately, treatment is on hold for at least another week until the shingles clear up.

The neurologist I saw this week seems to think the neuropathy and nerve pain is from the chemotherapy I had, but that what over a year and a half ago. I also mentioned to the urgent care doctor that my chemotherapy was a long time ago, and he said that it takes “a long time for these things to go away.” I never had such severe symptoms to begin with, though, so I am a little puzzled. He also said there’s “no magic cure for this.” Even without a magic cure, I’d like some answers and at least the possibility of relief, especially since this has been progressing for a month and a half.

I felt guilty for going to urgent care, and I felt even worse when I called the oncologist’s office and the person I spoke with on the phone questioned why I would go to the emergency room when I had spoken with the nurse the day before. (I could tell she sounded annoyed too.) “I just felt really bad,” I stammered. “I was dizzy and my head felt weird.” I knew it didn’t sound good. I don’t believe in wasting people’s time. What I wanted to say but didn’t, because I didn’t want to sound dramatic, was that I felt like I was dying. I have been sent to urgent care several times over the years and I know it’s a busy place with long waits, particularly if you’re lucky enough to not be in a dire situation. I wouldn’t have gone there if I didn’t feel as if I was about to pass out at my desk. “I really thought that I might die,” sounded ridiculous too, and I swallowed my words.

The terrible thing is that I think about death every day and the thought of no more pain or questions is appealing. Then I am appalled with myself. I have this thought every day. I know it’s terrible. It’s ungrateful. It’s an affront to everyone else fighting to live. Yet it occurs and I just let the sadness and disgust settle. Earlier this week, as I slept, I felt as if I could have died, as if death were an open door and I just had to slip through, but at the last second, I resisted. I woke up with my nose clogged and struggling to breathe a bit, so it wasn’t as dramatic as my dream state suggested.

I feel as if I’m becoming a pest, but the worse my symptoms become, the more desperate I feel. I have gone from feeling worried to scared to terrified over the past few months, and I am worried I have no answers in the future, only more pain and more questions.

My boyfriend, who listens to a lot of my calls to the doctors, says I’m not accurately describing the severity of the pain and numbness and he has always said I downplay my symptoms. It’s true. I feel as if I don’t want to bother the doctors with my troubles or I worry they think I am overdramatic. However, I think I’m past that point. My missives in my patient portal are sounding unhinged. Instead of “My head hurts and my body is numb. Should I be worried?” my recent messages are more like desperate pleas for help. When I feel bad or worry that I might be seen an impatient patient, I remember: They are not the ones who are in constant pain and discomfort. They are not the ones who can’t sleep because their muscles hurt and legs are twitching uncontrollably. They are not the ones who can’t do the same physical activity that was possible just a week ago. They don’t sit at their desks feeling as if they are going to pass out. Their chores aren’t hampered by deep calf pain. And they might not know how I really feel. I need to more accurately describe the severity of my symptoms and my concerns without sounding like a crazy person. (The latter, I’m afraid, is too late, but I suppose all cancer patients lose their minds from time to time.)

Before my Hodgkin’s lymphoma diagnosis, I was put off by some doctors for a few months and you would think I would learn. The difference is, I have confidence in all the doctors I am seeing now, but I’m starting to lose hope that I will ever get “better” and that I will always be like this. I need some answers and some hope, and both seem elusive.

 

Shingles, Delay in Treatment, ER

I am sitting in a place I hoped never to be again: the Urgent Care of Sloan-Kettering. I have thought about coming to the ER for more than a month (and even did end up at urgent care on vacation in October). I have even have had a little to-go bag packed for the past few days, something the triage nurse laughed with me about.

My symptoms come and go, but the numbness has gotten a lot worse, and I’m always in pain. It’s just a little bit of pain, and it’s not in the same place for long. I also get lightheaded and feel strange, but since it comes and goes, I haven’t known what to do. This past week I have felt increasingly terrible, to the point where I am afraid to move too much, because using my muscles makes them really twitchy and painful. I have stopped working out for now and feel like just a shadow of the person I was even a week ago. At work today, I felt really lightheaded and strange, with a buzzy feeling in my head. I had MRIs slated for Friday and Monday but I really feel alarmed since the numbness and pain has moved to my head.

I think I will probably be here for awhile. I always try to be grateful if I am in the best shape in the ER/Urgent Care. I’d rather be in this situation than being rushed in. I think they are going to do the MRI here. I am equally afraid it will show something or show nothing. I don’t want this to be serious, but I also want to know what this is, as I have been so miserable.

On the long cab ride up here, I watched the streets slip past (very slowly, aware of the meter) and tried to enjoy the luxury of a rare cab ride through the city and remember all the nice things. I passed the pub where Dylan Thomas drank himself to death (not a particularly nice memory, nor mine) but it’s also the place where me and another friend surprised my best friend, in town from Dublin, with U2 tickets when she came to visit me a few summers ago. I went past my friends’ workplace where we did lunchtime yoga and had lunch at her work cafeteria with a view of the river. I passed the Webster Hall area, where I have seen so many bands and just recently got to see a Q&A with A Tribe Called Quest. I also thought about how the driver should have taken a different route. But life has been good to me, and I need to remember that.

I was supposed to start chemo on Monday and took my initial doses that day and Tuesday morning, but I had developed a rash on Sunday that turned out to be shingles. My chemo is delayed for a few weeks until I get over the shingles. That was a bit of a disappointment as I was all geared up to do the chemo and now it will be at least a few more weeks. I had hoped these symptoms might be alleviated once I started the chemo.

I hope I leave here today with some answers.