I wasn’t sure she was gonna, but Phenon made it through Christimas, Tim’s birthday, and the last chemo day of Round 3 without being hospitalized (poo poo poo, knock on wood, etc.). She did not feel awesome, but she made it through every scheduled family party (which is a lot), plus the Muppet Movie, plus an extra family visit that was not even previously scheduled (yay for spontaneous visits from the North Carolina cousins!). Yesterday (Tuesday) was her last chemo day of Round 3, and it lasted a very, very long time. But her labs at the beginning of the appointment looked good, so she was not yet neutropenic. I watched her turn neutropenic before my eyes at 8:30 last night. I could almost see the little neutrophils croaking as she spoke. She drooped, and slouched, and her eyes got puffy, and she went to bed early. As the night progressed, her temperature rose, as did my anxiety level. We took her temperature every half hour, and she ranged from 99.9 to 100.3 (remember, the critical level is 100.4 or higher for an hour). By 2am, she dropped down to 99.5 and I decided to let it go, and just let us sleep. She was headed in the right direction, and if she got worse she would announce it loudly and clearly. So, Phenon slept until about 8am, at which time she was a kick-ass 98.3 degrees. So, she’s gotten through. Happy new year to one and all!
Date : December 2011 (8)
I have been tremendously buoyed by the PET/CT results, and have felt like all the shit of chemo is worth it for the stupid cancer to get dead. Phenon was also happy and fascinated by the PET/CT results, but I think maybe that was on more of an intellectual level. She is unimpressed by the chemo, and would like to avoid it as much as possible. There have been many attempts at bargaining this week. For example, “If I broke both of my legs, they’d probably postpone, or come to our house to do it instead of making us go to the hospital, right?” (When Tim pointed out that this would likely cause her to become an inpatient and still get chemo, she was not amused.)
Round 3 has been pretty rough. She feels exhausted, and sick to her stomach, and wrong in her skin. She’s starving (thanks, steroids) and the smell of everything makes her want to vomit (thanks, other chemo meds). She’s back to being unable to concentrate on anything other than junky magazines and goofy novels that she can finish in a few hours. Even those became too much for her to manage today. Yesterday Phenon slept nearly 18 hours, waking up only to express her significant discomfort. Her words get a little slurred when she feels this badly, so talking becomes a chore. Even music gets to be too much sometimes, and she just needs to stare into the silence.
When I think about it, Round 1 occurred after essentially three weeks of hospitalization, pain, discomfort, fear, and shock. Then Round 1 was a miserable nightmare of side effects and general yuckiness. When Round 2 began, her expectations were pretty low. But the new medicines really helped a lot, and she bounced back very quickly. So quickly, in fact, that she was able to go to school for 1-1/2 weeks (hooray!). I think that she felt normal. Except for the part where doing her hair meant putting it on the table in front of her, I really do think “normal” and “good” are the right descriptors. Perhaps even better than before, given all that extra lung space that she clearly hasn’t had in a very long time. I kind of thought all of that goodness would make her more tolerant of the chemo this time around. It sucks, but how great have the results been?!? But, I’m afraid, the effect has been the opposite. I think that feeling so well over the past week and a half made her realize what she’s missing when the chemo kicks in. Just how incredibly awful she really feels.
Nonetheless, it’s clear that she’s grateful for everyone who is supporting her. Phenon has been participating in a wellness study at the hsopital, to examine the physical, emotional, and social impact of chemotherapy on teens. And she noted to me that she has marked “no” to any signs of depression, or anxiety, or sense of isolation. She remarked how the only symptoms she has endorsed have been physical – fatigue, nausea, weakness, and so on. Phenon, in her wisdom, said she thought the study was limited, because it didn’t ask enough about her support system. She thinks the reason she has been doing so well is because of her friends and support system. Phenon hypothesized that youth who don’t have enough friends, or whose friends are upset when they aren’t able to show up to things, or who have trouble understanding what’s happening, are probably the ones who have the hardest time emotionally. She very clearly made the link between all of the texts / phone calls / cards / gifts / visits / kindness / love she has received and her ability to do well emotionally and socially throughout this process. She feels like shit – there’s no mistaking that. But she also feels lucky to have the incredible people in her life that she has. I’ve always thought that picking good people to be a part of her life was one of Phenon’s super-powers (disorganization is another super-power, but we need not address that now, right?). This trial has reinforced my belief in her super-powers. Y’all are good friends. Thanks.
Happy holidays to all of our loved ones. And cheers to a new year dawning, with health for all.
How about some pretty pictures to go with all the learnin’ we had yesterday about PET and CT scans? These are the PET scans we’ve all heard so much about. A little frame of reference: these pictures are a cross section of Phenon from the bottom looking up. The white circles on the far left and right are Phenons humerus (upper arm bone), her spine is at the bottom near the middle, the heart is the white-ish thing between the two dark grey areas which are her lungs.
First the scan from a couple of months ago. No wonder she was coughing!
And now the one from last week.
When last we heard from Julie and Phenon they had been down at the hospital for Phenon’s follow-up PET and CT scans. It wasn’t until this morning that we knew what it showed. So without further ado, here’s a bunch of information about PET and CT scans before we do the numbers.
A Positronic Emission Tomography (PET) Scan is a way of measuring metabolic activity, or the speed of cell growth. Cancer cells reproduce and grow really fast (that’s how Chemotherapy works: by messing with processes that these fast growing cells need to perform very frequently in order to grow). When cells grow really fast they suck up more fuel in the form of glucose (sugar) than other cells. If you bind some radioactive shit to glucose and inject it into a 13-year-old body, the PET scanner is able to take pictures of the “hot spots” where cells are eating a lot of radioactive glucose, thus showing where abnormal cell activity is happening and how much activity there is. At the same time they do a x-Ray Computed Tomography (CT) scan which is, as the name suggests, an x-ray. The CT scan shows the size of the mass. So, PET = functional, CT = structural.
Once the docs have these images they are able to rate the cell activity on a scale of 1-15. Phenon’s first scan a couple of months ago saw activity at a 14, a really frightening high number that indicates cancer cells growing at a very fast rate. It also showed some much smaller growths in the lymph nodes in Phenon’s neck. The CT scan at the same time showed the main growth in her lung measuring 10cm x 10cm x 13.7cm.
This latest scan showed that cell growth was down to a 2 out of 15. Yes, that’s a huge improvement and something that made everyone involved very happy. And the accompanying CT scan showed that the growth has shrunk by about 60% to 7.9cm x 5cm x 6.3cm. Also seriously good news. The other smaller growths are also shrinking quickly.
Round 3 of 4 began today. It was another 12 hour hospital day, but Julie said it was almost peaceful. Phenon doesn’t feel well now, but she’s well enough to want dinner and an episode of Glee. So we’re going to go do that now!
Phenon has had a lovely week. She started with a half day of school last Wednesday, which was her first time in the school building since October 19th. She did great (though she slept immediately upon getting home, and then got sick that night). Nonetheless, that kid is fiercely determined. And she made it through full days on Thursday and Friday!
Not to say it wasn’t complicated. Phenon has required a 504 Plan to allow her to have accommodations that are needed (for example, extra time on tests and assignments, permission to wear a hat to school, access to the health room without having to explain or justify, etc.). She’s also had to drop two classes, add one, and become an aid to the counseling department to make up for an extra elective that she couldn’t cover. Home-hospital teaching is in addition to her school day now, so figuring out how that works when she’s actually going to school during the day but is still working on assignments for the many weeks before this has been less than simple. But it’s all working out.
Phenon’s counselor is amazing and has gone way above the call of duty to figure out how to make this crazy amalgamation work. Her teachers (almost all of them, anyway) have been warm, and helpful, and kind. Her principal has also gone above and beyond the call, with personal phone calls and giving Phenon’s friends “hat passes” for last week so Phenon wouldn’t stick out like a sore thumb as the only kid wearing a hat (because you’re not allowed to wear a hat to school, ever). Her home-hospital teacher, Ms. Johnson, has also been really helpful and flexible and warm and shared her own experience of doing home-hospital teaching while going through chemo when she was younger. I can’t even begin to imagine how Phenon could have better academic and emotional support getting back to school.
Phenon also went to school on Monday, and then again today, and plans to go for the rest of the week. On Monday, she also participated in her Winter Choral Concert, which was amazing to see. The concert happened to be at the same place that she had a chorus concert on October 19th, so I had little heart palpitations as I walked into the building, but all went beautifully. The choral program at her school is amazing, and has been astonishingly supportive of my girl. I’m now a loyal fan forever and ever. Her chorus has been accepted to a national choral competition in Dallas at the end of February, and Phenon is absolutely on schedule to go with the Chamber Choir. Hooray!
So, all of that has been profoundly lovely. She’s been doing great. It’s been clear that she will recover from all of this far, far faster than I will. She’s trotting off to school and outings with friends now with aplomb, while I quake in my boots and obsess about percentages and stats and germs and allergies and food intake and fatigue and on and on and on. But, I work hard not to share these worries on a regular basis, and try to act just as casual as she is about heading in to school. I wake up at 2:53am each day with a fresh wave of worries, but now that I’ve got a little spare time during the day because she’s at school, I can just nap, right? Yeah. Well. Despite my own personal challenges, though, Phenon is really and truly doing great. If you ran into her, you wouldn’t know anything had ever been wrong. She seems that good.
Of course, there has to be a hiccup here and there, right? The PET/CT scan on Tuesday was that. Although I’ve been convinced that all of Children’s has some kind of litmus test about staff bedside manners, radiology (and, of course, surgery) is a glaring exception to this rule. I’m actually going to file a formal complaint. PET scans are just generally a drag. It’s not traumatizing. It’s not dramatically hideous. But it is remarkably unpleasant. We started with a very warm and friendly staff member who did the intake paperwork. But then the nurse had to put in two different IV lines, and was terribly uncommunicative about why and what was happening, despite my best efforts at advocacy and gentle (and then annoyed) questioning. Every injection Phenon got that day hurt horribly – gasping, cringing, wide-eyed pain each time, which is incredibly unusual for her. When we commented on that, each staff member acted like she was just overly sensitive and complain-y, despite my advocacy and my insistence that this isn’t normal. She’s genuinely experiencing pain she shouldn’t be.
It turned out that there was a crimp in the line in her vein – so the line did a little dogleg thing inside her vein, and that’s what was causing all that pain. They didn’t notice till they took it out. Then they were all astonished that she really WAS hurting more than she should have been! (Grrr, aaargh.) And there was a dearth of information about what was happening and what would come next. They injected Phenon with the contrast fluid for the CT scan with no warning and no preparation for the effects of that. Luckily, since Phenon had a CT scan before ever starting this process, she was prepared extensively for that by the community lab. Just for your own education, and just in case you ever need a CT scan yourself, and you end up with
- your ears get very hot
- you get strangely warm all over, in kind of a wave (this apparently feels akin to menopause)
- your stomach feels a little unsettled or queasy
- you feel like you’ve just peed all over the table
Wait – what was that last one? That seems important to warn a kid (or adult) about, right? At her very first CT, the technician told Phenon she would feel like she had just peed all over the place. She assured Phenon that she would not ACTUALLY pee on the table. She also said, “You won’t believe me. You’ll need to check for yourself, and then you’ll feel surprised that you really didn’t, because the feeling is THAT convincing.” When Phenon came out of that first scan, she wide-eyed-ly explained that the tech was exactly right. This time the feeling was exactly the same, but they didn’t warn her when they did it, and they didn’t explain a thing about what she would feel, how long she’d be in the damn machine (hours), and what they were looking for. I had to force every last bit of information out of them. I can’t imagine how terrifying it would have been to her if this had been the first time. But it wasn’t, so it was unpleasant and I was annoyed, but she really was okay.
And then they were all casual about how she was now totally radioactive, and she can’t be around other people because she could harm them and electrical/medical equipment because she’s so radioactive. And as for me, who would be with her all day? “I wouldn’t worry about it.” Oh. You wouldn’t?
Anyway, the bottom line is it was fine. Remarkably unpleasant, yes. But not a huge deal in the grand scheme. We will not have any results of the scan at least until Monday. The goal of the PET and CT are to see what the chemo is doing to the tumor. If the chemo is working its magic, we continue on the same course. If it isn’t working as well as they want, we will need to change to a more aggressive treatment course. Again, no pressure, right? I’m thinking it’s a good thing I attended a continuing education conference (required for my psychology license) last Friday on the topic of deep relaxation in the face of stress. I can manage until Monday with ease now! Ahem.
Despite all of this, it seemed pretty clear that we were going to get through the week without a single emergency. Then our little dog (Allegra) vomited blood and gore from my waist to my toes – so, in my mind, ALL OVER ME – at 3:45 this morning. We spent the wee hours in the emergency room and she’s been at the vet all day for IV fluids and observation. She’ll either come home tonight around 8pm or stay overnight. Since my cousin Erin’s dog has lymphoma and is going through chemo at the same time as Phenon, I was profoundly terrified that our puppy had lymphoma and that I was going to just collapse under the weight of cancer in 2011. But there is a limit, and Allegra just has an ulcer. She’s going to be fine. Some remarkably unpleasant times ahead for her and us, but she’s going to be just fine.
And now I think I’ll collapse in a puddle. Happy 15th Anniversary, Tim! Instead of us going out on a date tonight, we’re planning on pizza in front of the tv at home as I fall asleep on the sofa. But we will toast to health and lots and lots and lots of sleep!
This is going to be a really short post since I’m at work (shhh…don’t tell anyone at Beaconfire!). Phenon is off to a half day at school today and is super excited. As are we. This is her on her first day back. Note Allegra’s shameless bid to get in the picture.
Yesterday was day 8 in Phenon’s second round of chemo: the day she gets blood drawn, a couple of drugs and that’s that. It’s also the day when, in the first round of chemo, she totally crashed and went back in to the hospital for what I think ended up being five days.
Everything has been going great this time around. Phenon even got to go to Gabbie’s birthday party on Sunday (movie and dinner) and had an absolutely lovely time hanging out with many friends, who by all reports greeted her like some sort of rock star.
Monday was pretty mellow by comparison. A slow but relatively drama-free chemo morning – Phenon and Julie left the hospital by 1:00 (not too bad for a 1-2 hour appointment that started at 9am). Some of the delay was due to Phenon’s attending doc (Shana) having difficulty at home with her 4-year-old son. Apparently he takes issue with wearing pants. (He sounds exceptionally precocious. Shana said his argument was “You can’t take me to school without pants. And if you can’t take me to school, then you have to stay home with me. Horray!”)
Phenon’s Home/Health Teacher arrived at 3:00 to do some book learnin’. I was working downstairs until Rowan came down to tell me that Phenon needed me. No big deal, right? I went up and Phenon looked fine but said she was feeling kind of dizzy and needed to lie down. Not entirely convinced that her feeling poorly wasn’t a reaction to having to do school work, we sent the HHTeacher home and Phenon to bed and took her temperature. 99.8 degrees. Shit.
Things were not looking good throughout the evening as her temp climbed to as high as 100.0 (over 100.4 for an hour you may recall, means hospitalization). We started getting things together for she and Julie to head back down to the hospital and continued to take her temp for the next couple of hours. Mostly it hovered right there at 100 until just before I was supposed to head out for band practice (my Thrilltones opening for The Pietasters and The Slackers Dec 16 at the 9:30 Club, all-ages show, you’re all coming right? right?!? http://www.930.com/concerts/#/930/53421/) when it dropped to 99.8 again and we thought maybe breathing was something we could do again…though cautiously.
It was tricky, though. Phenon’s main complaint was a headache. She can’t take ibuprofen at any point during chemo. But acetominophen (tylenol) is totally cool – except when she might be neutropenic and taking tylenol might mask a fever. Shit again. So Julie called the oncologist on call to find out how to treat a headache without masking a fever. “Impossible. It can’t be done.” WTF? There’s seriously NOTHING to make her more comfortable? “Um, have you tried a cool washcloth? That might help with both the headache and the fever?” Sigh. Phenon toughed it out without the medicine, and her headache did fade as her temperature lowered.
I went off to practice for a couple of hours and this morning she was a tepid 98.3! She did get frantically hungry again this morning, and then vomited wretchedly from the empty stomach right before she got to the food (DELICIOUS blintzes with fresh strawberries from Barb). The vomiting was unpleasant but not the worst and she downed the vittles just a few minutes later. Unfortunatley it reactivated her headache, which caused her to literally scream from pain for a while. Given the 98.3 temperature, though, tylenol is now authorized, and it did it’s magical job. Headache vanquished.
So that was that. Apparently our girl fought off whatever was trying to get her and is even going to attempt school tomorrow. This is her facebook statement to friends in that regard:
Hey just to let everyone from school know that tomorrow I am coming back for half the day. Please do not crowd me to much and before you say hello you will be given hand sanitizer. Also if u think there is ANY chance you could be sick I’m sorry but u can’t come to close as my immune system sucks and If I get sick I WILL BE HOSPITALIZED thnk u:)
It’s kind of hard to describe how Phenon has been doing this week, so I haven’t attempted it so far. But I can feel the hours that go by without a blog post, and I figure I’ve got about three more hours before I start getting texts and e-mails asking how Phenon is doing in Round 2! 🙂 So, I decided to make an attempt at describing it.
First, though, a little background. My mom has a strong dislike for words that fit the model of _i_e (blank-eye-blank-eee) – that is, fine or nice. When she models a new item of clothing or presents you with a meal, _i_e words are forbidden, because they are mostly filler words that convey very little. You have to pick something more descriptive. You really have to commit to good or to bad. Unfortunately, and I’m sorry mom, the only word I can think of to describe how Phenon is doing right now is “fine-ish.” She’s neither good nor bad.
Monday was very long, and Phenon did not feel great, but she didn’t feel horrible, either. This is similar to her experience during round 1, so I think it’s pretty reliable. Phenon described discomfort in her stomach, but did not need an “emesis basin” (vomit bucket) at all. She ate dinner with us, and though she felt picky about what she was eating and slumped in her chair for most of the meal, she did alright.
Chemo on Tuesday was shorter – we were free by noon. But Phenon’s stomach felt BAD. This is when I learned the finer point of the medications that we have been calling “anti-nausea” medicines. Although this is what the doctors and nurses have been calling them, these medicines are actually anti-emetics, which means they are designed to stop vomiting. Usually this means that you don’t feel nausea as well, but that has not been the case for Phenon. She has felt lots and lots of nausea this week. The smell and taste she experiences when they inject saline solution (when they “flush” her IV line in between medicines) and heparin (what they inject into her port at the end of the day to prevent blood clots in her port) seem amplified compared to her previous experience. She is describing very heightened sensitivity to smells and tastes, and they are increasing her nausea. (The parking garage at Children’s seems set up to torture her, as is the smell of the upholstery in my car.) During Phenon’s last hospitalization, she was using a tube of mint lifesavers to counteract the smell of medicines, but that wasn’t quite strong enough. So, in preparation for this week I bought some essential oils and some little tupperware-ish cups that I stuffed with cotton balls and drops of essential oils (one peppermint, one vanilla). The vanilla was a flop – just smells like vanilla extract (don’t know why I didn’t think to just use THAT, would have been much cheaper!!) and is kind of an alcohol-ish bad smell. But peppermint worked for a while. However, it’s a bit too strong, so Phenon is back to holding spearmint lifesavers under her nose during line flushes. Anyway, she spent most of the afternoon and evening in bed. Again, however, she was able to pull of eating dinner and watching a show, which was nice.
By Wednesday, the aromatherapy was intolerable, and the lifesavers were insufficient, so when they flushed her line the smell was so bad that she instantly vomited up all of her hot chocolate from the morning. She felt awful throughout the treatment, and held the emesis bag by her side for the hours that we were there. But, we got to leave by noon, and Phenon had an intense craving for Ethiopian food (kik alecha, to be more precise) on the way home. The steroids she is on as part of her treatment seem to be causing a really crappy mix of challenges – she is getting a kind of gnawing, angry, insistent hunger while simultaneously feeling on the verge of vomiting. She feels both desperate to eat and horrified by the idea of eating. This combination is just MEAN. So when we left the hospital, Phenon felt desperate to eat Ethiopian food. Nothing else sounded remotely tolerable. As someone who has vomited a lot (my pregnancy with Phenon was dramatically puke-y one), Ethiopian seemed a good bet because it’s already pureed, and the injera is very soft and smooshy. So, we stopped at Langano’s on the way home (I generally prefer other Ethiopian restaurants in Silver Spring, but this is Phenon’s favorit kik alecha, hands down). Unfortunately, this was a super heart burn-y meal. I also felt it for hours afterwards, so it’s hard to say whether Phenon’s misery and discomfort yesterday were an effect of the poor lunch decision or because of the chemo. She was in bed moaning for most of the rest of the day yesterday. Her conservatory class was last night, and she was not able to go – unlike the Wednesday in Round 1. I gave her all of the heartburn medicine that was permitted, and this eventually seemed to help some. Again, picky about dinner, but able to pull off a family dinner and a tv show.
Today has been pretty good. It felt like a vacation day because we didn’t have to venture to the hospital. All Phenon needed (aside from taking steroids and anti-emetics) was her colony stimulating factor shot (neulasta). Roxanne, our exceptionally helpful friend/neighbor who has coordinated a helping hands calendar, is also an R.N. and very kindly agreed to give Phenon her shot so that we didn’t have to travel to the hospital (which is feeling frighteningly germy these days). But the shot was sent to us in asinine packaging that was designed to eat up parts of my “vacation” day and to piss me off. Roxanne is infinitely resourceful, however, which matches our experience of nurses throughout this crazy-ass experience. She found a work-around and was able to give Phenon her shot after all, even though the pharmacy and the manufacturer said it was impossible and that we would just have to go to the hospital. Phenon ate a mild lunch, and apparently played on the computer all afternoon – I say “apparently” because I missed it. I fell asleep on the sofa and slept for THREE hours. Luckily, I woke up in time to pick up Rowan from school! Phenon seems almost normal right now. Em and Danie stopped by for a short visit, and she didn’t seem sick or uncomfortable in any way. I went back through this blog, and vomiting was clearly intensifying by this point in the process during Round 1. So, I’m feeling optimistic, though my pessimistic side is kicking me for jinxing the goodness by feeling optimistic! Maybe these new medications are going to keep things from sliding downhill over the next few days. Maybe she’ll continue to feel fine (yes, yes, _i_e, I know) over the weekend, and Monday will run smoothly and uneventfully. And neutropenia will be a one-time fluke that only happened with Round 1. Right? Easy breezy?
My dogs are feeling a little tense right now, because I keep knocking on wood after each sentence. There’s no one at the door, guys. It’s just my optimism and my realism and my pessimism having a little superstitious battle.