I've been thinking that I should update this blog in case people who didn't know me in person were reading it, and, uh, imagining the worst. So, hi! I'm now 3 years and 9 months from diagnosis.
Things are still scary. I was in the ER a couple of months ago with a sore back, and my oncologist frustrated by the slow pace of my diagnosis, ordered the attending doc to get me an MRI right away because I'm "at high risk of recurrence". I'm still on maintenance drugs, one of which is really, really rough. I'm still having nightmares because of hot flashes. I still have so many scars.
Otherwise, my life is SO GOOD. I don't know how things will pan out, but I've had years of happiness and fulfilling work since treatment, and I know that this makes me lucky. When I was lying in surgical recovery, or feeling so dizzy from chemo, I felt like I couldn't let myself imagine having this much time ahead of me. It hurt too much. But now I've had that time and spent the hell out of it, and it's been so rich, and cancer can't ever take that away from me.
Sunday, July 6, 2014
Friday, May 3, 2013
Ongoing
Ok, update time! Things have been going well for me. I've lived two and a half years from diagnosis, which surprises me every day. I have a wonderful job (well, several wonderful jobs, but that's how I like it).
I'm still always thinking about the cancer returning, but I take so much comfort in knowing that I've finally got what I wanted the whole time I was in treatment: I have a chance to feel "normal" for a while (and hopefully forever!). I can step out of cancerland, go for hikes, do meaningful work, and wake up next to my husband. I feel insanely lucky to have this, and I wish I could wrap it up in a box and give it to my friends who don't.
The down side is that I'm feeling totally exhausted from maintenance tasks -- all the little things I do to keep my body healthy. I have trouble staying on top of them all:
I'm still always thinking about the cancer returning, but I take so much comfort in knowing that I've finally got what I wanted the whole time I was in treatment: I have a chance to feel "normal" for a while (and hopefully forever!). I can step out of cancerland, go for hikes, do meaningful work, and wake up next to my husband. I feel insanely lucky to have this, and I wish I could wrap it up in a box and give it to my friends who don't.
The down side is that I'm feeling totally exhausted from maintenance tasks -- all the little things I do to keep my body healthy. I have trouble staying on top of them all:
- I get monthly Lupron shots.
- I get a Zometa infusion every six months.
- I take a bunch of pills a day at different times. Tamoxifen, vitamin D, and so on.
- I have an exercise plan, because it's associated with reduced risk of cancer recurrence. Note that I do exactly as much exercise as the studies support, and no more ;)
- In order to prevent the worst potential side effect of Zometa -- jaw necrosis -- I keep my teeth fastidiously clean. I floss for ages and use fluoride rinse twice a day.
- I have to keep stretching all the time or I'll get atrophy from my surgeries.
- My sleep is terrible from the Lupron. I'm working on a new plan to fix this.
- My arms still have some issues, though they're much better post-surgery. It's possible that the cancer drugs damaged the nerves. I can totally work around this, but that maintenance (stretches, doctor's visits) is more stuff to remember.
- I go for mammograms and checkups at the cancer hospital.
- There's more, and I'm sure cancer patients can imagine them. Holla, cancer bros.
Okay, so 2.5 years in, and I feel lucky, overwhelmed, and tired of flossing all the dang time. Oh, this magical cancer journey.
Sunday, December 9, 2012
Flashbacks
Hello! I've been at a loss for what to write. The immediate misery of extreme treatment has given way to a slow, uneventful period of maintenance treatment.
I'm trying to decide whether to stay on Lupron, because the drug makes me completely miserable for one week per shot. I'm still struggling with this "new math". "Quality of life is important!" "Yeah, but not being dead is also important!" "But the side-effects might kill you anyway!" Etc etc.
I'm able to enjoy a pretty normal life, most of the time. I forget why my shirts don't fit quite right or why I suddenly feel so INCREDIBLY HOT*. And then I'll read a story about a woman who was coasting along for 9 years after treatment until a sudden brutal metastasis, and I'm back in that unbearably scary Cancerland, where things can go from normal to dreadful in the blink of an eye.
For the past week, I've had a cold. I've also been clutching a thermometer like it's my new best friend. Every single time I take my temperature, I've got no fever. So why do I do it?
A few months ago, something happened that was so scary I didn't want to write about it. I'm not good at admitting when I'm afraid, but my obsessive use of the thermometer does all the admitting for me, I think.
I'd had a pretty normal cold. It was finally fading, so I went on a fantastic hike with some friends. It was the kind of hike that made me feel strong and good and myself! Plus, I caught a snake, so, y'know, best day ever.
But that night, my cold returned with a vengeance. I had chills and I felt really awful. I let it go for a day or two, and then finally thought to take my temperature. 101 degrees. Huh. Could I be getting a flu right on the tail of my cold?
That was when I looked under my arm.
Where my skin was tight from so many surgeries, I had a growing itchy red spot. I'd had cellulitis before, but it was a slow-moving thing -- an infected cut that happened totally by chance, lingered for a week, and was easily knocked down with antibiotics.
But this time, likely because of an overly-tight backpack, I'd damaged the skin under my arm and somehow contracted Super Cellulitis.
I went to the ER. I felt worse and worse as the doctors tried (and failed) to draw blood -- I've always had stealth veins. I started off joking and laughing and ended lying on the blood draw bench. I got admitted. They gave me a bag of IV antibiotics. My fever went up and up.
Throughout all of this, my husband was by my side, going through all of the misery of hospitalization right there with me. Which is why I get angry with cancer, even though it's an abstract concept and doesn't take my calls.
By midnight, I was shaking and asked for a blanket. My fever had spiked to 104, and the nurses were looking worried. I heard them talking about whether to give me an x-ray of my lungs; instantly I imagined them discovering metastases in my lungs, and having my whole life change, and I responded in the only intelligent way I could: I threw up all over the entire room.
My husband woke up and fainted. It was very impressive. The nurses put him on a stretcher and carried him out. I asked the nurses if I should call my parents; they said "Wait a few hours," but then told me that my condition was "Serious." So I called my parents and told them that I loved them. "I've had a good life," I said. And then I lay back and waited to find out if I was going to make it.
The weirdest stuff passed through my mind. I wanted to keep the light on, because if this was the end, I wanted to see it. Does that even make sense? I lay there feeling so mad -- really, does a little cut do me in after all of this? I watched the sky turn from navy to turquoise and suddenly my fever was going down. The antibiotics were working. The lady in the next bed walked past me to get to the toilet and I looked at her face; we shared a really happy smile, even though we'd never spoken and she only understood Spanish. In my haze I interpreted it as "We're still alive in this terrible place."
They wheeled my husband back in, and I reached over and we held hands very tightly. I slept.
They kept me in the hospital for another few hours once I woke up, to give me more antibiotics. They finally sent me home with a fever of 101 -- but I was steadily getting cooler so I think they were happy with the trend.
They kept me in the hospital for another few hours once I woke up, to give me more antibiotics. They finally sent me home with a fever of 101 -- but I was steadily getting cooler so I think they were happy with the trend.
I haven't wanted to write about this experience because it's not an especially happy story, and because I don't want to seem dramatic. I've heard much more terrible hospital stories. Really, I was in there for a night, and they fixed me up.
But argh, it's hard to adapt to a life after cancer. Fingers snap, and you're sick. Fingers snap, and you're okay. It's freaking exhausting. I'm not great at it, yet, which is why I clutch a thermometer when I have a cold. But it's also why, when a friend and I go out for coffee, I'm usually just grinning away and have pretty much no interest in making decisions like "what should we eat"? I'm alive! Hot dog.
Also, the Lupron makes it hard for me to remember stuff or focus. But let's just pretend I'm a master of inner peace.
*I think I'm going to start calling these "Hotflashbacks".
Sunday, June 17, 2012
Still alive: the good and the bad (but mostly good)
It's been a long time! I'm finding it hard to put my day-to-day life into words. I'm still job-hunting - the hunt was delayed by a few health issues, though now I'm back at it with a vengeance. I'm still spending time with friends. I'm still hiking. I'm still in a strange limbo space.
I thought I'd write about some parts of the post-cancer experience:
The good: Have you ever really looked at your hands?
Not all of the life-appreciating bliss of cancer treatment has carried over into my current state, where I'm obsessively checking job sites, cleaning the house, grumbling at the lack of dish soap, and doing all kinds of mundane things I couldn't do before. While kind of sad, this also seems like a good sign that I'm finding what the cancer press calls "the new normal".
However, there are places where my focus narrows to the present moment and the mindfulness is definitely still present. Recently I heard a cancer patient say that she appreciates food so much more, and I realized that this is also true of me. Months of busted taste buds and nausea can really make a gal appreciate the subtleties of the blandest potato.
So, I get totally blissed-out by food. I drink really, really mild tea and my brain is pretty much transported to a forest full of jasmine. I also get blissed-out by sunny days, pretty flowers, a warm breeze... I always liked these things, but I get kind of overwhelmed by them in a new way. It's surprising and nice.
The bad: Recurring nightmares
So, uh. It's that thing we don't like talking about: the possible return of my cancer, which is called a recurrence. As much as I'm keeping busy and filling my life with good things, a part of me is basically waiting around to see if I make it. The first sign of recurrence is a physical pain or nausea or other symptom, which is a hypochondriac's nightmare. Local recurrence (breast recurrence) is bad; distant recurrence is fatal.
The hard part is that my body's still pretty beat up by treatment, so I'm more susceptible to random health problems. So far, I've had...
And there have been so many more. You can see how this might get a little maddening. It doesn't get in my way most of the time, though typing all of this out has been hard.
The in-between: I kind of liked the old normal. Do I really need a new one?
I thought I'd write about some parts of the post-cancer experience:
The good: Have you ever really looked at your hands?
Not all of the life-appreciating bliss of cancer treatment has carried over into my current state, where I'm obsessively checking job sites, cleaning the house, grumbling at the lack of dish soap, and doing all kinds of mundane things I couldn't do before. While kind of sad, this also seems like a good sign that I'm finding what the cancer press calls "the new normal".
However, there are places where my focus narrows to the present moment and the mindfulness is definitely still present. Recently I heard a cancer patient say that she appreciates food so much more, and I realized that this is also true of me. Months of busted taste buds and nausea can really make a gal appreciate the subtleties of the blandest potato.
So, I get totally blissed-out by food. I drink really, really mild tea and my brain is pretty much transported to a forest full of jasmine. I also get blissed-out by sunny days, pretty flowers, a warm breeze... I always liked these things, but I get kind of overwhelmed by them in a new way. It's surprising and nice.
The bad: Recurring nightmares
So, uh. It's that thing we don't like talking about: the possible return of my cancer, which is called a recurrence. As much as I'm keeping busy and filling my life with good things, a part of me is basically waiting around to see if I make it. The first sign of recurrence is a physical pain or nausea or other symptom, which is a hypochondriac's nightmare. Local recurrence (breast recurrence) is bad; distant recurrence is fatal.
The hard part is that my body's still pretty beat up by treatment, so I'm more susceptible to random health problems. So far, I've had...
- a loss of hearing in one ear. Brain metastasis? No, just a random virus.
- knee pain, foot pain, shoulder pain. Bone mets? Nope, just my body desperately trying to get itself together.
- a terrible pain under my rib cage that is fortunately mostly gone. Liver metastasis? Nope, just my gallbladder acting up.
- redness, itching and pain at my surgery site. Inflammatory breast cancer recurrence? Nope, just a nasty infection that landed me in the hospital, a terrifying experience that I won't go into here.
And there have been so many more. You can see how this might get a little maddening. It doesn't get in my way most of the time, though typing all of this out has been hard.
The in-between: I kind of liked the old normal. Do I really need a new one?
Every day I wake up and I'm alive. I can't say how grateful I am. Some things are more frustrating to me, and other things have more weight. I love my friends so much and I'm so scatterbrained that I often forget to call. I have a hard time with my new body, though I love it so much when I'm hauling it up a steep slope and it's not tiring out.
Things are amazing. Things are sometimes bad, but the amazing parts generally cancel them out. I think it's this way for most people, and if this is my life, I'll freaking take it.
Sunday, April 22, 2012
Employment, boredom and you
I'm waiting to hear back from a job, and it's making me antsy, so I thought I'd write about jobhunting and cancer.
One of the hardest parts of being a young cancer patient is that your employment status can be much less secure. I'm speaking broadly, of course; unemployment can hit people of all ages, and up until my diagnosis I was very lucky. But it's definitely a common and frustrating road block in the whole cancer-before-forty marathon.
I was diagnosed right after I finished a short-term internship which followed my MS degree. My MS was a huge life decision, and it was a big change in my overall plan. I was so excited to be heading toward what I hoped would be a lifetime (or at least a whole bunch) of fun and meaningful work.
My breast cancer diagnosis put the plan on hold. I didn't want to apply for jobs when I didn't know how I'd be able to handle treatment, which is notoriously changeable and hard to schedule around - surprise! You need extra surgery! Surprise blood clot! etc. So, for a year and a half I did nothing but survive. Now I'm healthy enough to start job hunting. And I'm hitting a few obstacles:
One of the hardest parts of being a young cancer patient is that your employment status can be much less secure. I'm speaking broadly, of course; unemployment can hit people of all ages, and up until my diagnosis I was very lucky. But it's definitely a common and frustrating road block in the whole cancer-before-forty marathon.
I was diagnosed right after I finished a short-term internship which followed my MS degree. My MS was a huge life decision, and it was a big change in my overall plan. I was so excited to be heading toward what I hoped would be a lifetime (or at least a whole bunch) of fun and meaningful work.
My breast cancer diagnosis put the plan on hold. I didn't want to apply for jobs when I didn't know how I'd be able to handle treatment, which is notoriously changeable and hard to schedule around - surprise! You need extra surgery! Surprise blood clot! etc. So, for a year and a half I did nothing but survive. Now I'm healthy enough to start job hunting. And I'm hitting a few obstacles:
- I don't know if or when my cancer might recur. There's the big one. It makes me feel guilty, queasy and sometimes paralyzed.
- I'm still recovering, physically. My level of fatigue is unpredictable. Some days I'm racing; some days I'm exhausted. My brain is slowly returning to normal, but I'm not 100%.
- I'm still in treatment. I'm still getting lupron buttshots, taking tamoxifen, and getting zometa. I still get regular checkups and I still get mammograms.
- There's a 1.5 year gap in my resume. So far this hasn't been a big problem, but I worry somebody'll notice.
Thursday, April 19, 2012
Wednesday, April 18, 2012
Tiptoeing along
I've been trying to think of what to write for a while now, and I think the only solution is to just start typing.
It's now been a year since chemo ended. A year ago this week, I was between surgeries. Between surgeries #3 and #4 out of about 7, that is - but I was getting ready for the most devastating surgery. This year I'm planning on getting a tattoo on my mastectomy scar that says "brave", once the danger of skin metastasis has faded.
I'm feeling physically good. I've been busting my butt on the elliptical, and hiking long distances. I look healthy; I'm more than ten pounds up from chemo. I'm no longer sleeping all day.
Everything is so deceptively normal, in fact, that I've started beating myself up for not getting more work done, for not having more strength - and then I remember why. It's goofy, but nice. Luckily I have parents, a husband and a support group telling me to be gentle with myself. They say it takes two years to recover, and I'm only halfway there.
Every day that passes ups my survival odds. It's still so, so scary. This morning my husband got sad, all of a sudden, in a coffee shop - that's how it happens. I told him he was tough. He is.
Being married to this man is the coolest thing.
I've been thinking about the changes I've made since cancer; I've been patiently working on fixing up little parts of how I live. I clean the house all the time (I used to be insanely messy). I dress more comfortably and attractively, which sounds so shallow but it goes a long way toward feeling more at home in my new body. I feel so much more grounded when these little things are organized.
Anyway, I'm doing the best I can with the body I have, as it slowly heals and simultaneously dives into menopause at 31. Last weekend I tromped through the woods with some nature nuts looking for tiny butterflies, and I was totally in my element. Cancer was the farthest thing on my mind (trying to remember a million tiny field cues for eentsy butterflies was probably my main thought), and it felt good.
It's now been a year since chemo ended. A year ago this week, I was between surgeries. Between surgeries #3 and #4 out of about 7, that is - but I was getting ready for the most devastating surgery. This year I'm planning on getting a tattoo on my mastectomy scar that says "brave", once the danger of skin metastasis has faded.
I'm feeling physically good. I've been busting my butt on the elliptical, and hiking long distances. I look healthy; I'm more than ten pounds up from chemo. I'm no longer sleeping all day.
Everything is so deceptively normal, in fact, that I've started beating myself up for not getting more work done, for not having more strength - and then I remember why. It's goofy, but nice. Luckily I have parents, a husband and a support group telling me to be gentle with myself. They say it takes two years to recover, and I'm only halfway there.
Every day that passes ups my survival odds. It's still so, so scary. This morning my husband got sad, all of a sudden, in a coffee shop - that's how it happens. I told him he was tough. He is.
Being married to this man is the coolest thing.
I've been thinking about the changes I've made since cancer; I've been patiently working on fixing up little parts of how I live. I clean the house all the time (I used to be insanely messy). I dress more comfortably and attractively, which sounds so shallow but it goes a long way toward feeling more at home in my new body. I feel so much more grounded when these little things are organized.
Anyway, I'm doing the best I can with the body I have, as it slowly heals and simultaneously dives into menopause at 31. Last weekend I tromped through the woods with some nature nuts looking for tiny butterflies, and I was totally in my element. Cancer was the farthest thing on my mind (trying to remember a million tiny field cues for eentsy butterflies was probably my main thought), and it felt good.
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