Author Archives: Jax

Musical flashback: Moonlight Feels Right

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The song played every time Mike and I ate at Joe’s Crab Shack. I never heard it anywhere else – ever – until today. 

It reminded Mike of his childhood. He said its one of the few things he associated with “happy memories” of his early life and his parents. He remembered hearing it at his parents’ softball games when he was really young. But he didn’t know the song name or the group that sang the tune. 

For his birthday one year, I researched and found it – “Moonlight Feels Right” by Starbuck. (This was pre-Shazam.) I stealthily put the song on his iPod. SURPRISE! It’s a good memory. 

But it’s an awful song. Ridiculously stereotypical 70s sound. And it was playing on the Sirius 70s On 7 channel when I was on my way to pick up the kids. I hadn’t heard the song in a long time. I smiled at the happy memory, but I couldn’t wait for it to end. 

It’s still an awful song. 

The power of the bath: making a surgery decision

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I rediscovered baths this week.

As a teenager, I would spend HOURS in the tub – reading, relaxing, thinking. When I went to college, there was a tub on each floor, but it was in a glorified cleaning closet that was dark and dingy and gross. I don’t know anyone who used a tub in Justin Hall. I continued to take long baths when I came home from college on breaks.

Once I was “on my own,” baths disappeared from my life. Too much to do. Too tired. Other priorities for my time. It’s unfortunate, really, since I’ve lived in places with really nice tubs.

Our first apartment in St. Louis, when Mike was in law school, had a deep claw foot tub original to the building built in the early 1900s. That tub was so flipping deep that I almost needed steps to get in. Water up to your neck. But it was short. I think I took one bath there in four years.

Our first house had a brand new whirlpool tub. I never took a bath there. Our second house had a whirlpool tub built for two. Seriously, while resting my back on one side, I couldn’t reach the other with my legs, which meant sliding down too far. I used the bath pillow as a floatation device the two times I took a bath in that house. It’s not relaxing when you’re concentrating on not drowning.

My current house has a whirlpool tub that is just right. Not too deep, not too long. Still, in three years, I never used it until Tuesday. That’s not to say it hasn’t been USED – the kids love to take baths in there since it’s deeper than the tub in their bathroom. And it has jets! And makes bubbles!

Tuesday I had my annual physical with my primary doc. During the “well woman” portion of the visit, the doctor discovered an ingrown hair (yep, my hair is S-L-O-W-L-Y growing back!) just to the left of center *down there. * It was showing signs of infection and needed to be drained.

SIDE NOTE: Everyone has an issue with a word or two, right? One of my issues is with the word gro*n, which is technically where this problem lies. See, I can’t even type the word, let alone say it…

I’ve seen a lot of docs this year, and I’ve had a lot of tests. Some of the tests and doctor pokes have been painful, some not. But NOTHING I’ve been through hurt as much as when my primary doc injected the heart of the infection with a numbing agent. Hot diggity! That shot hurt. It was all I could do not to kick her in the head or scream.

Once numb, she drained the area and gave instruction to “rest in a warm tub, with a glass of wine and a good book.”

Doctor’s orders, right?

With kids in bed and a new book in hand (no wine since my liver is still not super happy with chemo), I turned on the faucet of the tub and climbed in. I sat there for a few minutes, starting to read the book, then got out. The tub ledge was dusty, and I couldn’t relax so I cleaned it. I read a chapter or two, then went to bed. I slept pretty well, so I decided to take a bath the next night also.

This time, the tub was clean so I could relax. The book was an easy read and perfect for the bath. I read several chapters then set the book aside. I sunk lower in the tub and let the water wash over me. I allowed my hands and arms float on the surface as I closed my eyes and breathed deeply.

I don’t know how long I stayed there, concentrating on my breathing, but I was able to identify and “solve” a couple of the things that have been bothering me lately – primarily weighing my surgery options.

I know a lot of women don’t have an option, but having the choice between lumpectomy and mastectomy is almost worse. What if I make the wrong decision? If this comes back, will I always question my decision? Why can’t someone just TELL me what to do?

I always maintained that I wanted my entire breast removed, but after meeting with the radiation oncologist (who is also the head of the cancer center), I started to rethink that. All the docs have stressed that it’s my decision, but I get the feeling that they’re recommending the “breast conservation surgery” (that’s what they call lumpectomy – defining it in those three words kinda shows which way they lean, doesn’t it?).

One of the biggest benefits to the lumpectomy would be recovery time. It’s far less invasive with almost the same success rate of removing the entire breast. At this point, I just want my energy back. I want to NOT be exhausted ALL THE TIME. I want to enjoy stuff again. I want to be able to DO stuff again. And a lumpectomy will allow me to get back to “me” faster.

Of course, there are cons also. Lumpectomy means I will undergo 4-6 weeks of daily radiation. I feel a little better about radiation after talking to the radiation oncologist. Given the size of my breasts, I (probably) will not blister and burn. Fatigue is a side effect, but the doc said women who have had chemo first don’t think the tiredness is as bad as during chemo. Radiation is only 15 minutes a day, and they will make sure I have early appointments.

I still have to meet with the plastic surgeon to understand reconstruction with lumpectomy. As much as I know my breasts have served their purpose (successfully fed two babies!) and I don’t like to think of myself as overly vain or concerned about such trivial things, I really don’t want to be misshapen or have a deep dimple on my right side.

I’ll probably HAVE to take a few more baths before I commit to a surgery plan. That warm water gives me much needed clarity and decision-making power.

Fatigue, Brows, Oxygen, Kiddos – Updates

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I’m tired. Really, really tired. I need – nope, I require – a nap every day, and bedtime is definitely before 10 p.m. (usually closer to 9, really). The oncologist says this is because of the cumulative effects of the chemo. Including this week, only five more rounds (11 rounds DONE!). Thank goodness. Fridays at the cancer center are starting to wear me out.

I met with the surgeon on Monday. I still have the choice of lumpectomy or mastectomy, and I’m thankful to have options since many women don’t. As I expected, there are more doctors to see (radiology oncologist tomorrow and plastic surgeon TBD) and more test to schedule (mammogram and ultrasound) before surgery. I reiterated my desire to have surgery done and recovery complete before next semester (Labor Day). Right now, that looks do-able.

Other updates:

– Classes are done, and I’ve never been happier to get to the end of the semester. I’m almost done with grading, and since I’m teaching the same three classes in the fall, prep time for fall will be minimal. I’m looking forward to resting and just taking it easy. (And naps whenever I want – yay!)

– Drawing eyebrows is hard. My eyebrows and eyelashes are nonexistent these days, and without any hair on my head, I look… like a cancer patient. I’ve tried eyebrow gels and pencils and powders and crèmes… I’ve tried freehanding the brows and using a variety of stencils. I usually get one dark brow, one lighter, one with a nice arch, one flat across, one super wide, one a little too narrow. Basically, if you see me IRL, please only look at my right brow – it’s the better one most days. And forget lashes – I’ve glued my eyelids together more than once with my “eyelash wigs” (Lauren’s term for false lashes).

– My oxygen levels are still not always where they need to be. I continue monitoring myself with a pulse ox meter I bought at Walgreens. Walking from my car to the office causes my levels to get in the low 90s/high 80s. And even though the levels climb to the high 90s pretty quickly, I find myself short of breath with a really rapid heart rate for a while. After talking to the doc, I think some of this is related to not having much stamina – it’s been about two months since before the fever and the pneumonia and even feeling blah before that. So almost two months since I’ve done much. I’ve started walking on the days when I can (Fridays, Saturdays, Wednesdays, Thursdays – the other days, I’m zapped). It’s slow going, but Ethan usually walks with me and cheers me on. I’ll get the stamina back – it’ll just take time. And I really hope that’s the answer to getting oxygen levels more stable, more often.

– I’ve coined a new phrase – “free balding” – which amuses me to no end. “Free balding” means going out in public without a turban or scarf or wig or anything on my bald head – basically, it’s going cranially commando. Used in a sentence: “It’s crazy hot so I’m going to free bald it to the grocery store.”

– Ethan has REALLY stepped up in the last few weeks. Reports from his teachers and the principal are that he’s really maturing this year, and his behavior is much better than at the beginning of the year. He’s been just amazing through this whole cancer thing. He looks out for me – if I’m chilled, he’ll bring me the thermometer and insist I make sure I’m not running a fever. He’ll proactively do things around the house, like clean bathrooms and take out the garbage. He’s been helping with Lauren, and he’s been very cuddly. He’s a great kid.

– Lauren turned five on Monday, and I almost forgot her birthday. Blame it on end of the semester craziness or chemo brain or just being a bad mom, but her birthday slipped my mind until late Saturday. It was a mad scramble to order cupcakes for school, bake cupcakes for home, figure out birthday presents (and shop and wrap), pull together decorations. Sundays and Mondays are my “worst” days – basically, I just don’t want to do anything – and those were the days I had to take to pull off all-things birthday. It happened. She was thrilled. And now she’s five. (Hot damn, my baby is five…)

When asked what she wanted for her birthday, Lauren replied, "Cupcakes!"

When asked what she wanted for her birthday, Lauren replied, “Cupcakes!” (She also got her first “big girl” bike, ballet classes, and some toys.) 

Back on the chemo train

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I’m feeling better than I have in weeks! After being released from the hospital on Monday, I took Tuesday to rest, and then I was back at work on Wednesday and Thursday.

Upon returning to class this week, a student gave me this "pocket angel." She carried it around with her for the last four years as she battled leukemia. "I believe these things should be passed on to those who need them," she said. "You should carry this around with you until you're better, then pass it on to someone who needs it more."

Upon returning to class this week, a student gave me this “pocket angel.” She carried this coin around with her for the last four years as she battled leukemia. “I believe these things should be passed on to those who need them,” she said. “You should carry this around with you until you’re better, then pass it on to someone who needs it more.”

The official diagnosis: pneumonia (viral) and hypoxemia (abnormally low blood oxygen level). With that diagnosis, I had my first “insurance sucks” moment when my insurance company denied the doc’s request for at-home oxygen. Low oxygen levels apparently does not mean I qualify for… oxygen? Makes total sense, right?!

I’ve managed without the oxygen just fine. I use an at-home pulseox (little device I put my finger in to determine my blood oxygen level) when I start to feel funny. From there, I can figure out what to do if my levels are too low (inhaler, deep breathing, sit down/relax, etc.) or too high. Since my levels were SO low, the docs think my oxygen levels have been low for a long time (probably since my GI problems last month) and my body has adapted to less-than-normal levels. Not good. So I feel funny when my oxygen is in the low 80s, and I feel just as funny when my oxygen is in the high 90s.

Treatment started again today. It’s the second phase of chemo. This one is supposed to be 12 weeks of “easy.” Since I’m still recovering from the fever and pneumonia, the oncologist only started one of two of the drugs for this phase (taxol), with the second one being added in a future treatment (carboplatin, which is only administered every three weeks). Some people can’t tolerate carboplatin, so it’s not a HUGE deal if I don’t get it. As the oncologist said, “The carbo is just the icing on the cake.”

Goal for this week: STAY OUT OF THE HOSPITAL!

Discharged! ER! Admitted! Stupid lungs

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The doctors discharged me on St. Pat’s day. I had a super productive, feel-good-kind of day for about 36 hours, then things began to go downhill. By Friday, I was coughing and felt weak and tired. On Saturday, I spiked another 101 degree fever, and I had shortness of breath just walking across the room.

“Mommy, don’t try to brave this out. Promise me you’ll go to the hospital and get better,” Ethan said as he handed me the thermometer to confirm the fever. “And can I give you a hug?”

(I will ALWAYS take hugs from E. He’s not a super touchy-feely kid, so when he offers, I accept.)

I called the triage nurse who directed me to go the ER. After some blood tests and a CT scan (and a $75 copay), the ER doc dismissed me with a diagnosis of “not quite pneumonia.” She prescribed an oral antibiotic, plus drinking lots of fluids, and she sent me home.

Things just kept going downhill from there. Walking from the couch to the bathroom was a challenge – my heart would race; I couldn’t get my breathing under control; the coughing would start (and not end). I managed to teach my classes on Monday and Tuesday. Since I still didn’t have much of a voice, I modified my presentation and uploaded it to the Internet. Students reviewed it, then I hit the high points in a very condensed lecture. I used the next half hour for students to talk about the examples they brought to class, then we broke into work time for their assignment. I never left the chair at the front of the room, and I didn’t talk too much. Still, I had to rest in my office (across the hall from the classroom) for 20 minutes before I could imagine walking to my car, which was its own challenge.

Tuesday night was awful. I coughed and moaned all night. I couldn’t get comfortable. I couldn’t catch my breath. I was miserable. (And I kept everyone up all night – except Lauren. She slept fine.)

Because of lack of sleep, I stayed in bed on Wednesday morning. I didn’t have to teach until 12:30, so I thought I could get a few more hours rest. Unfortunately, the coughing, the moaning, the racing heart didn’t stop. I just couldn’t get out of bed, but I couldn’t get comfortable. I finally forced myself around 10 – “I’ll just slip on some yoga pants, go to work, teach my one class, and go to the doctor,” I thought. It took me an hour to put on pants, shirt, and socks. I didn’t even mess with makeup or contact lenses or shoes that tie.

My head was a little dizzy, and I was a block or so away from the house when I realized I forgot my office keys on the kitchen counter. I turned the car around. The walk from the garage to the kitchen (maybe 30 steps one way?) caused me to nearly pass out. I called my mom. “I’m going to the ER,” I said. “There’s no way I can get from my car to the office today, let alone actually TEACH a class.”

I sent a quick note canceling my class and then drove the five miles to the hospital. When they took me back to an exam room, my oxygen level was in the low 60s (should be near 100) – and this was after sitting in a wheelchair, waiting, for about 20 minutes. Nothing makes doctors run faster to your room than a dangerously low oxygen level.

The doc was the same one who admitted me the first time a few weeks ago. I repeated my symptoms: shortness of breath, racing heart, coughing without stopping. Within two hours, I was admitted to the hospital again.

So I’m back in the hospital – this time, on oxygen, an oral and IV antibiotic cocktail, breathing treatments that feel like I’m sucking on a leaf blower, and more tests and doctors/specialists. A CT scan yesterday (and compared to Saturday’s) showed “cloudy” lungs, or as my oncologist called it “the look of crushed glass.” This morning, I underwent a bronchoscopy (tube/camera down my nose, through my windpipe and larynx and into my lungs – where the doc injected saline and sucked it back out for testing). The good news: the doc called my windpipe “perfect – exactly how the windpipe of a young person who has never smoked should look.” The bad news: it could be days before the test results are in. It could be an infection, a virus, a fungus, or inflammation. And until they know, they can’t adequately treat it. All they can do is throw a little of everything at it. So far, I’ve had antibiotics that treat MRSA, anthrax, the plague, plus generic bacterial infections. Bases seem to be covered.

I’m still really winded whenever I move – even adjusting blankets in my sleep can cause my oxygen levels to dip below 90 (setting off alarms). Walking to/from the bathroom causes my oxygen levels to drop to the high 70s (setting off alarms and causing nurses to check on me). There’s definitely something going on within my lungs and my body doesn’t like it.

It’s also caused another delay in my chemo treatment. I can’t have my blood counts low from chemo while I’m battling whatever this is. My oncologist was funny as he was delivering the news of the delay. He balled up his fists and pounded them down as he said, “But I love killing cancer, and we know the chemo is killing your cancer. I hate delays, but you need to get better.” He went on to say the docs I have are the same ones who treated a lingering cough he had last month, and that I was in really good hands. The doctor’s doctors? Yes, please.

Another thing that sucks, B had a minor medical procedure today, and I wish I could be with him. But I’m tethered to my oxygen tank and IV tower in the hospital, and he’s stuck on his couch with pain meds and frozen peas. It would just be so nice to curl up next to him…

But I’m here through the weekend, probably Monday at least. I just hope they find something so we can treat it.

Finally, a super big thanks to my friends for getting my computer and grading to me, and for checking on my Thursday classes. I REALLY appreciate good colleagues and friends!