Something Else

It’s the middle of the night and I can’t sleep for reasons of both body and mind. I have been a little quiet the past week, because I’ve been internally freaking out—not even about the return of the cancer, but of some other symptoms that have been plaguing me since mid-October.

It started when I was on vacation, when I felt numbness in my arms and legs. Sometimes it would wake me up. Eventually, I ended up in the ER in Scotland, where the blood tests came back normal. I followed up with some more normal blood tests at Sloan-Kettering. I saw a primary care physician who also said my blood tests looked normal, but she kept asking me when I was going to go to MSKCC. (The thing with being a cancer patient, sometimes, is that other doctors don’t want to deal with you if the answer doesn’t seem clear cut.) On the 8th of November, I saw a nurse practitioner who did some tests and ruled some things out, but nothing seemed to point to any obvious cause. I had hoped my MRI would provide some insight, and though it showed that the hint of a tumor had grown to over a centimeter in a few months, I’m beginning to worry that this is something else. My oncologists are referring me to a neurologist.

In the meantime, the occasional numbness in my arms and legs and in between my shoulder blades has become progressively worse. It hasn’t just been a slow decline, however; some days are better than others. I finally tried to get back to working out this week, but after four days in a row, my muscles would cramp up and freeze. On Thanksgiving, my hands kept freezing into claws. The next day I felt OK, but then by Saturday, I felt off again, and on Sunday, I discovered the beginnings of a rash.

I can’t sleep because I have deep pain in my feet and twitching all throughout my legs, as well as a throbbing sensation, almost as if I can feel all the blood coursing through my veins. I am full of random pains—in my knees, elbows, shoulders. Whoever has a voodoo doll of me, I am sorry for what I have done. You can stop it now.

Since it’s so late, I decided to take to the blog, and I already feel a little better, with my mind at ease a bit. It is more comforting than looking up my symptoms on the Internet and convincing myself I have permanent nerve damage, the activity that I had previously been engaged in since about 2 am when the tingling, burning and pain nudged me out of a half-sleep state.

When I feel OK, it’s easy to forget how terrible I’ve felt over the past few months, and the times when I’ve almost just thought about going to an ER, or the nights I’ve laid awake, terrified of what’s happening. I’ve tried to be brave through all of this, but these latest symptoms have scared me more than anything over the past four years. At one point today, a small jolt of pain brought me out of contentment and I realized that I’ve been in various states of pain for more than a month. I’m worried of what it could be but also worried that I’ll end up posing desperate pleas on message boards for answers. However, I know I am lucky to have access to great doctors, so I hope the mysteries of my symptoms fall into place and relief is hopefully in sight. I’m finally tired again, so goodnight.

 

It’s Back

As I expected, the MRI today showed that the cancer is back. The spot that they saw on the scan in late August is now about an inch, so they would like to get started on treatment right away. I am sad, but not surprised. A small part of me is relieved, since I have been feeling so bad for the past month and a half. (Though I do wish the tumor had waited until after I was back from vacation to start causing trouble.)

Of course, before I start the treatment, the insurance company needs the doctors to fax something to them, and I need to order the medication through the mail. Hopefully, I can start chemo the week after Thanksgiving. The treatment itself doesn’t seem too terrible. I take Capecitabine (Xeloda) twice a day every day for 14 days, and on those last five days I also take Temozolomide, then I take two weeks off. The good news is that it’s oral medication, since I have exactly one good vein left. It won’t be fun—side effects include fatigue, nausea and dry hands and feet, as well as a sunburn type of feeling. Mainly, however, the fatigue sounds like it would be limited to the latter part of the two weeks and the ensuing four or five days.

These chemo drugs don’t cause hair loss, though it’s kind of funny that my hair is so short now since I buzzed it to be Eleven from Stranger Things for Halloween. I’ll be able to eat whatever I want, nausea permitting, without the raw fruit, vegetable and fish restrictions. (Last night, a friend who has joined me for many “last meals” and “last nights out” and I went out for sushi, just in case it would be off-limits soon.) I can still work out as much as I want, energy permitting.

After three cycles, I go in for a scan to see if the tumor has been reduced. After the chemo, I may have an additional embolization. The doctor said there are a lot of treatments available for this neuroendocrine tumor.

The sad part is that it seems like this is about management. The tumor can go away, but it seems as if these neuroendocrine tumors might just be something I have for the rest of my life.

I also don’t know how long the rest of my life will be. But then again, who knows for certain? Some things make me sad—like holding my boyfriend’s hand and knowing I might not grow old with him. I don’t want to die before my mom does and leave her all alone.

It’s not quite time for such morbid thoughts, though. In my darkest times, I am tired of being sick and would like to give up. I think about how it’s lucky I don’t have children to leave behind, but I also sometimes have survivor’s guilt—couldn’t I give my life up to someone who made more of a difference or will do something important? I have always tried to enjoy and savor life as it is, and I will continue to do so. As much as I need freelance work sometimes, I am going to try to prioritize taking care of myself and being with the people that I care about.

I have been really sad the past few weeks, which has included the Indians’ World Series loss, the election and the worsening of my health. Oddly, it was the discontinuation of unlimited membership of my favorite workout service that brought me to tears earlier this week. It was the final tiny straw in a series of events—a final small disappointment that pushed me over the edge. This cancer news, though it has brought tears, hasn’t hit me as hard. It’s too big to grasp.

In my times of self-pity, I long for things to return to “normal.” It is what I have been hoping for since I found the lymphoma lump almost four years ago. A few months ago, I talked to someone else who was about to start treatment for her second type of cancer. We talked about limitations and how hard they are to accept. It is time I accept that things may never go back to the version of “normal” that I have wanted, and I’m learning to let go of things I thought I might have one day. I suppose it’s something that happens as you get older. When your timeline seems shortened however, it sometimes seems like, instead of letting go of your potential dreams gently and gracefully—like letting go of balloons that drift upwards into the sky as you glance up wistfully—disease comes along and pops them, leaving you confused and holding strings with deflated bits of rubber at the ends.

As I move forward, I will process this more and will probably turn to the blog to sort things out. I am looking forward to a final week before chemo and also to hopefully shrinking down this tumor.

Hoping for the Best, Preparing for the Worst

Lately, we have been hearing a lot about “hoping for the best, but preparing for the worst.” I’ve often stuck to that bit of advice, especially when preparing for upcoming scans and tests. Some would say I’m a pessimist, but I disagree. I am often an optimist, but I like a cushion of pessimism, so I don’t get my hopes up.

Of course, there’s also that saying, “Worrying is like praying for what you don’t want.” But I’m a worrier. I have an MRI scheduled for tomorrow, and I don’t expect the news to be good. After my last scan in August, the doctor said it looked clear, but then I got a call a week later: The official report was that there may have been something abnormal on the scan, so they’re taking a closer look.

Since then, I’ve been trying to enjoy myself and keep things normal. After the past year of death and illness, we took a much-needed vacation to Iceland and Scotland, with a one-day detour to Manchester. It was beautiful and I had so much fun. The very first day of vacation, however, I woke up and felt off–a little uncoordinated and a little bit numb in my extremities. It got a little bit worse the next day, and four days into my vacation, I ended up at the emergency room (since I didn’t have a doctor in Scotland) for some answers. The blood tests all came back normal. Even though I still felt a bit off, my mind, at least, was at ease, and I enjoyed the rest of my vacation.

In a hotel bed in Iceland, with my limbs going numb, I was terrified and I vowed to take better care of myself.

Then I got a two-week cold when I returned. I felt OK, with some small symptoms—inexplicably numb shins—but then it eventually got worse. I saw a general practitioner almost two weeks ago, but she didn’t have many answers, though she did rule out a slipped disc since the numbness is in so many different places—my legs, arms and in between my shoulder blades. I feel lightheaded and the weekend before last, I sometimes felt like I would pass out. I eventually ended up taking a blood test at Sloan-Kettering last Tuesday.

The blood tests don’t show anything wrong. In the best case scenario, it’s an electrolyte imbalance, and I can handle things with taking my pancreatic enzymes and taking good care of myself. In the worst-case scenario, the MRI will show that the cancer is back. I’d take more tests over the return of the cancer. I went to see my lymphoma oncologist today. At one point, I almost broke down, because I’m tired of being sick. Sometimes, my head feels weird and a limb is going numb and I’m trying to act normal while I’m really freaking out. This week has been a bit better than last week, though I can’t tell if I’ve felt better of if I’m getting used to feeling weird.

I have been dreading the scan and the bad news it could bring, but I also want to feel better soon. Until then, I have been hoping for the best, while preparing for the worst. There has been a lot more that I have wanted to write these past few months, but I have been too busy and too tired to write. I have started so many posts that I never finished. This brief post is mostly for me, to document the hopefulness and the worry.