Mind Games

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Yesterday was one of those days that could have either gone spectacularly bad or wonderfully good. Thankfully, it was the latter.

My son began his first-ever summer camp yesterday, a swim camp at the pool down the street from our house. He’s been taking lessons for more than a year now from the folks who run the camp, but since my mother-in-law takes care of him during the day, this would be his first time being left somewhere without a family member.

I had no idea how he’d react. He’s very clingy to me, so I expected tears and possibly a full-on meltdown.

To add to that anxiety, I also had a checkup appointment with my oncologist scheduled at the same time camp was to begin. Thankfully, I would be able to drop him off a bit early and with the cancer center being just down the road from my house, if everything went smoothly, I could make it to both things.

While anxiety-inducing, this logistical dance was an almost-welcome distraction from my appointment, wherein I’d receive the results of a brain MRI I had last week, along with my regular blood draw.

Last fall, when I got really sick after my first dose of Taxol, I had to get a brain scan done because they were afraid of brain metastasis. Thankfully, the symptoms I experienced were from the chemo, and the scan was clear, with one small exception–a little cyst on my pituitary gland. My oncologist said it was nothing to be alarmed about, and they would keep an eye on it.

Fast-forward eight months, and here we are, getting a follow-up MRI.

Even though I knew this was sort of a routine maintenance thing, I was still terrified. As the tech said to me almost apologetically as he got me prepped to slide into the tube, “I know nobody wants to be here doing this.” I assured him I didn’t, but I also appreciated that he was there to do the job. There are few things scarier than being rolled into a tiny tube (I don’t know how a claustrophobic would ever survive) that makes noises that sound like the effects from some terrible space invaders B-movie (laser sounds, lots of banging and clanging), knowing that this machine could reveal actual invaders taking over healthy tissue in your body. Martians sort of pale in comparison.

I had to wait a whole week to get the results this time. I tried my best to not think about it, to stay busy and distracted. But sitting in my doctor’s office, staring at the framed photos of his grandkids and a “Doctors have a lot of patience” cross-stitch on the wall, I felt as though I might crawl right out of my skin.

I sometimes wonder what it must be like for my oncologist before he walks into that room. On good days, he delivers news like he gave me–all clear, nothing’s changed, you’re going to be just fine. Others, he tells people things they never want to hear: it’s spread, it’s bigger, it’s not responding to treatment.

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Never has negative been such a sweet word.

I floated out of the cancer center with my clean report in hand, once again feeling an almost overwhelming sense of gratitude. I know how easily my story could change, or have gone awry. I know how many others are suffering and have suffered. So I am thankful for every moment like this. And I’m trying to use these little victories to propel me forward.

Back at camp, my son had a great day, too. There were no tears at drop-off–just a quick kiss and “bye, mom!” as he zoomed off to join the other kids on the playground. That day, he jumped into the pool for the first time without holding the teacher’s hands–a big advance for our previously timid to jump toddler. Both of us, leaping into the future.

On Shoes Dropping

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Last fall when I was really sick after my first dose of Taxol, my dear friend Carla sent me an incredible book to help wile away the hours of headaches, fever and worry.

The book was “In the Body of the World,” a memoir by Eve Ensler, the writer and activist best known for creating “The Vagina Monologues.” It details her fight with uterine cancer, while giving a healthy dose of perspective in the form of harrowing tales of the horrifically abused women she advocates for in the Congo.

While I related to her words and experiences on so many levels, one point she made really resonated with me above all others. Ensler talks about her cancer diagnosis and dealing with the feelings of “why me?” She explains that having survived sexual abuse at the hands of her father, as well as abusive relationships with other men, she sort of felt like she’d been through her really bad thing. And now, even though she’d already been through hell, she was being put through it again.

Yes! I know it’s unrealistic, but after my mom died, I sort of felt like I’d paid my heartache dues. Sure, I knew there were plenty of bad things that could and would happen to me, but I felt like maybe I’d earned a pass to not have to experience anything really catastrophic for a while.

As Ensler and I both learned, unfortunately, life doesn’t work that way. Bad things happen to good people. Bad things happen to people who’ve already been through more than their fair share of bad things. Bad things happen on top of other bad things. Bad things don’t have a rhyme or reason. There’s no real pattern. And that’s what makes them so damn scary.

As I walk this path of survivorship, it’s hard for me to keep the fear at bay knowing this truth. There are no free passes. This shit could come back. It could come back today, next week, next year. There’s no guarantee.

I made a therapy appointment today. As I wrestle with all these feelings, I know this is the right move for me. Thankfully, the cancer center has counselors on staff to help people like me make sense of all this and try to move on with our lives. I’m excited to take the first step.

 

A Change of Plans

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I haven’t updated my treatment status in a while, and that’s mostly because it’s been sort of in flux the past month.

As I mentioned a few posts back, I got really sick right after starting Taxol. This was the drug that was supposed to be “a piece of cake” compared to my first round of chemo with the Adriamycin/Cytoxin cocktail.

Of course, I’d be the special snowflake that proves that wrong.

Three weeks after that first dose, and after finally having my two-week fever and headache subside, I went in for treatment only to find out my white blood cell count was still incredibly low. This is not normal for this drug.

So, my oncologist came in to tell me that I obviously cannot tolerate Taxol (and it was the source of my fever and other problems), and they are very hesitant to continue giving it to me because if it hits my immune system this hard (counts still low three full weeks after treatment), then it could cause damage to my bone marrow.

I already had an appointment with my surgeon scheduled for the following Monday, so my oncologist ordered a rush MRI for that day so the results would be ready for my surgery appointment. So, for the second time that week, I climbed into the ol’ MRI tube, this time to scan my chest (at least they gave me headphones and let me listen to Pandora this time around–’80s pop music helps make the MRI go by a lot faster).

That Monday, my surgeon shared the results. My tumors were pretty much undetectable, and the right side was totally clear. The only thing he noticed was a tiny mass on the left side that he said looked benign. It will get removed during surgery.

That was a week ago, and now we’re just waiting for my immune system to get back on track to schedule my surgery, which could happen as soon as this month or next month. Does that kind of throw a wrench into the holidays? Yes. But, I am happy to get it over with a bit sooner, and I’m even happier to hopefully be done with chemo. (Although, if there is cancer in the pathology report from the tissue they remove during surgery, they may order more chemo.)

I asked my oncologist’s PA what discontinuing chemo (I still had 11 doses of Taxol scheduled) means for my treatment. She told me that Taxol gives me a 3% better chance of the cancer not recurring. While it sucks to lose that, saving my bone marrow is more important at this point. She also told me that the anti-estrogen meds I’ll be on for the next 5-10 years (my cancer is estrogen receptive, which basically means that estrogen feeds it) increase my chances of it not recurring by 50%, so that made me feel a little better.

So, that’s where we are right now. I’m still sort of in limbo as far as when the next steps happen, but I know they’ll come soon. In the meantime, I’m trying to mentally prepare myself for surgery and all that comes with it. Everyone tells me it’s not as bad as chemo, but I just don’t know.

The Sick Blanket

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This blanket has seen better days.

When I was a kid, we had a special blanket in our house that we referred to as the “sick blanket.” Well-worn to a buttery softness, its faded 1960s floral pattern seemed to instantly soothe any invalid wrapped within its calming embrace.

Since I was diagnosed, several people have given me blankets. And while these new blankets are cozy and lovely, when I feel really cruddy I find myself reaching for my own “sick blanket.” A gift from my mother when I went away to college, the faded blue afghan is frayed and a bit ratty, but it’s also incredibly comforting.

I’ve spent a lot of time with the “sick blanket” the past two weeks. I started Taxol on Sept. 28, and two days later I started feeling bad. I was running a fever, which made me feel totally run-down. I took some Tylenol and a nap and waited for it to pass.

Fast-forward two weeks. I’ve been fighting a fever this whole time, which came with a headache, chills and other fun symptoms. I went to the doctor several times and got poked and prodded more than once to do all sorts of tests to determine the source of the fever. After multiple rounds of clean lab work, my doctors were perplexed. They gave me an antibiotic to try, but weren’t sure it would actually do anything since they couldn’t find any sign of infection.

On Monday of this week, I called to let them know it was still going on, and my oncologist decided I should have a brain MRI. Cue the stomach drop. This is not a test you want to have ordered. I immediately lost it, my mind going to all kinds of dark places and scenarios.

Yesterday, I went in for my weekly consult and to get chemo. My lab results showed my white blood cell count was too low, so they wouldn’t give me chemo. And the PA whom I usually see told me that my oncologist now wants to do a PET scan if the MRI results come back clean. Cue more freak-out.

I straight-up asked her if they think I have more cancer, and she said my oncologist has concerns, but this doesn’t necessarily mean there’s anything going on. I also asked her if this could possibly be a result of the Taxol. She said that was a possibility and that my oncologist’s partner had a patient who basically had a fever the entire time she was on Taxol. But, she said they wanted that to be the last box they check off, after they rule out everything else.

Rationally, I know it’s good to do these tests to be sure there’s not something else happening. If there is, we need to know so we can know exactly how to proceed. But I am scared. SO scared. The thought of more cancer showing up on one of these tests sends me into a tailspin. It makes me nauseous to think about it. I hope and pray this is just my body’s reaction to the Taxol, because that’s something I can handle. More cancer is not.

I’m feeling much better today (and have been progressively for the past few days). My fever and headache are mostly gone, and while I’m still wiped out from all of this, I am actually at work today and feeling halfway normal. I’m hoping this is all a good sign.

In the meantime, I wait. I’ll probably spend more time with the “sick blanket” this weekend, too. I’m not feeling as sick, but I still need the comfort.