It has been quite a week. We have had a lot of (capital “F”) Feelings this week. Whenever we have Feelings, it’s hard for me to write a post, so I’ve been meaning to write every day this week, but haven’t gotten to it. So, I’ve decided to try to write a “just the facts, ma’am” kind of post instead. Perhaps that will help me get it done! We’ve had a good news, bad news kind of week, so I’m going to do all of the good news first.
Good news! Phenon’s weight is now ONE POUND more than she weighed in August (before this all began). It took a long time to make up for the massive weight loss during her hospitalizations, but you all have done it with your marvelous food and desserts. Her clothes fit again – hooray! This weight of hers maximizes her body’s ability to respond to chemo and to kick lymphoma’s butt, so extra special thank you’s!
Good news! This is Phenon’s very last round of chemo! It has been a rough chemo week, physically, emotionally, and bureaucratically. The national chemotherapy medicine shortage showed its ugly face this week. On Monday, Phenon got all but one of her chemo meds because the hospital ran out. It took hours to find that medicine at another hospital that had enough to spare. It took several more hours for that medicine to be sent to Children’s. Bad news! After that, it only took 10 minutes to realize that it was THE WRONG MEDICINE. They were finally able to get the right medicine, the one that she is NOT anaphylactically allergic to, by 10am on Tuesday. But because she missed her Monday dose, that meant Phenon had to add an EXTRA DAY of chemo this week (Thursday). That extra day cost her a lot emotionally. She had been counting down the days of chemo/clinic time, and seeing that number go up was really rough. It knocked her almost as low as I’ve seen her during this process. Good news! Yesterday was the extra day, so now, only one more clinic/chemo day to go! (We don’t THINK there’s any way for that ticker to go back up again.) Usually that last day would be Monday, but Monday is a holiday, so Tuesday, January 17th is Phenon’s last day of chemo. It’s a short day: only two medicines. Bad news! Because of the Monday holiday, Tuesday is likely to be a total madhouse of overbookings and delays. Thus, our 45 minute appointment MAY take 6 hours or so (it has happened before).
Good news! Teen Room Zoe posted a comment to our paying it forward post, and your generosity is already making inpatient oncology/hematology hospitalization a less miserable experience for the teens there right now. Hooray!! Thank you!!
Good news! I heard from Erica (Amani’s mom), and you all have been incredibly generous to her, too. She is so grateful. Bad news! Amani is having a terrible week, and Erica’s job has been more inflexible. The road for them continues to be incredibly rough.
Bad news! During Phenon’s most recent doctor appointment, while Phenon was saying how excited she was to be almost done, Payal “reminded” her that there is still the possibility of radiation, based on her PET/CT results. We were quite thrown off – no mention of radiation therapy was made when we discussed those results. Turns out – oops – they meant to. When Shana came in, we had a big discussion about the medium-level possibility of radiation. So, here’s the scoop. As you may recall, at the last PET/CT scan, the CT showed that Phenon’s tumor had shrunk by about 60 percent, and some portion of what remains is supporting structure, not malignancy. But EXACTLY how much is not malignancy is not known. So it’s all an estimate based on previous research. They have found that the cancer doesn’t usually come back if they kill 80 percent of the mass AND the PET scan (activity level) is “negative.” This means that, as of the last scan, Phenon still has 20 percent killing left to do. While that seems easy-breezy given the 60 percent kill in the first two rounds, it’s apparently not that easy. The biggest bang for the chemo buck usually comes in the first two rounds. The last 20 percent may, or may not, happen with the second two rounds of chemo. Thus, the medium-level chance that she’s not done yet. As for the “negative” PET scan, there is apparently medical debate as to what counts as a “negative” scan. A 2 out of 14 is a good low number, but is not a negative result. A 0 out of 14 would be definitively negative. A 1 – well… that would be up for debate.
Neutral news! Phenon’s next PET/CT scan will happen towards the end of the month (around the 27th is the goal, but still waiting for actual date). An 80 percent tumor shrinkage (or more) with a PET activity result of 0 will mean Phenon is done and cured – an unequivocally great result. A less than 80 percent tumor shrinkage (let’s say 78 percent) and a PET activity result of 1 will mean a very difficult calculus weighing the long-term negative side effects of radiation against the small possibilities of tumor resurgence. Worst case: A less than 80 percent tumor shrinkage (let’s say 70 percent) and a PET activity result of 2 or more will mean a definite need for radiation therapy.
What does radiation entail, you ask? Well, I have a list of about 6,000 questions, myself, so I can’t fill you in very well right now. But, (bad news!) they said that radiation therapy will involve DAILY treatment for 2 to 3 weeks. Good news! Each appointment is only 15 minutes long (so they say – I’m certain, though, that the 15 minutes doesn’t account for check-in, paperwork, and waiting room time), and will happen at either Georgetown or UMBC. Good news! Radiation does not generally cause nausea, does not involve needle sticks or port access, and does not cause hair loss or delay hair re-growth. Bad news! Radiation can result in fatigue, immune suppression, and need for blood transfusions. And the long-term side effects are, well, quite a thing. To put it simply, the possibility of radiation is one of the things that has been contributing to my fragile ability to sleep through a night. I had begun to sleep better after the last PET/CT results. Now it looks like I’ll have to wait for the next results before I can hope for a good night’s sleep.
So, you ask, when will Phenon get to be done with home-hospital teaching and get to return to school? We now have no idea. We thought Phenon would be back to school, at the latest, on the first day of the next quarter – January 24th. She will probably be ready to go back around the 18th, but that’s exams and whatnot, so it doesn’t make sense to go back before the 24th. And she will. She won’t have her PET/CT results before then. But there is the possibility, then, that she’ll go back and then have to re-withdraw for several weeks while she does radiation. Like I said, I have a list of questions. (One of which is, could she do radiation later? Like April or May? Or July? That way she could go back to school and stay a while?)
Bad news! All of this radiation talk put a real damper on Phenon’s sense of resilience this week. And now she is in the full swing of chemo side effects – the feeling wrong in her body, fatigue, staring into space, the inability to concentrate, the horrible stomach combined with the steroid-driven desperation to eat. She wakes up between 4:00 and 5:00 each morning in a full-blown yelling panic of “you have to bring me something to eat right this second or I’m going to DIE!” But, of course, everything I am coherently able to offer at that time of day sounds vomit-inducing. I know from previous rounds that this will last just a few more days – she may even feel alright tomorrow morning and be able to go to Rowan’s basketball game. (She had a lot of fun filming his game last week and learning how to edit a video for him.) But in the meantime she feels horrid. She is helped by simple companionship and having our full attention (so I haven’t gotten much done this week other than being by her side). And she has obsessively focused on her Make-A-Wish Foundation plan this week as a way to console herself and imagine herself out of this place. So yesterday, we moved a cozy chair into the kitchen (this is not a BIG kitchen, mind you – it got CROWDED in there!) so she could mumble at me about what she wanted to eat for every meal during her Make-A-Wish week. Phenon’s current wish idea is beach-related (this is her third major wish plan, so far, so we’ll see where we end up by the time the volunteers come to do her interview), so we also spent a full 30 minutes discussing potential bathing suit options (color choices, style choices, show scars? cover scars?). I am grateful for the distraction.
And that’s that. Today Phenon gets her last neulasta shot (thank you, again, Roxanne!) at home. That means tonight will be rough – she always has major discomfort and sleeplessness the night after her shot. But she’ll probably feel better by Sunday, and Monday will be a lovely holiday. Have a good weekend, everyone! And happy MLK day!