Our minds and hearts are uploading not only the reality of Chloe’s diagnosis, but also we are having to learn and integrate a mountain of detailed information about her care. Not only could I have not foreseen what her (daily) care would look like, but I am a bit blindsided that I am expected to be responsible for participating so much. I would be lying if I didn’t say I’m feeling a little resentful about my responsibilities. As it stands, I haven’t really had time to be alone with my thoughts since we got that dreadful phone call last Monday night. I’ve been writing these journal entries in the quiet and not-so-quiet moments in between listening to care givers at the hospital and tending to Jordan at the RMD house (Jordan stays awake until I go to bed at the hotel. He is experiencing his own levels of anxiety and fear that he can not directly expres s).
And then, there’s Chloe’s learning curve. She has several oral meds to take, a couple of times per day. t’s safe to say that Craig and I (and the nurses) have spent the better part of our waking hours the last two days trying to get her to take her meds. On Saturday, the nurse was spending so much time in our room trying to help her (and us) with this. I kept wondering how she had time for this. So I asked her how many patients are assigned to a nurse during each shift. She said, “two to three”. Oh! I thought they were the nurse for the whole floor. (Did I mention we were living in a bubble? It is a very small bubble! I had no idea they had so few patients assigned to each nurse! The nurse explained that care is so comprehensive and there are so many parameters they are monitoring with blood cancers that it requires a high level of care.) No wonder she was able to spend so much time with us.
Over the weekend, after having many long conversations with the care givers about meds, the effects of meds, which meds are working best to alleviate chemo effects, etc, I have quickly come to realize that I am expected to know the names of her medications and what they are being given for. This mentality (of expectation) is so built into the nursing staff that no one really sat me down to tell me that I need to learn all of this….. I am just figuring out, as of this weekend, that I am to know all of this information (for the purposes of communicating with the nursing staff). There are three chemo drugs, given at different schedules and on different days, that I never wanted to even see the names of (in my lifetime), let alone memorize. There are multiple stomach medications for multiple uses: anti-nausea (there’s three of those alone), anti-acid, and a couple of stool-related ones, because she is still a bit backed up. Then there’s the antibiotic she gets through her IV (prophylactically), and the antibiotic she takes on weekends to prevent bacterial pneumonia. Can you see why my mind is spinning? I’m sure I didn’t even remember them all. And I can’t remember which meds are IV and which are not (some are available in either form!). Yesterday I requested that I need to see these things in writing, because I am a visual learner and all of the talking about them in the world won’t help me learn them. So the nurse brought me a print out of all of the drugs that are in her order. This didn’t help much, because there are SO. MANY. And I didn’t recognize all of them. I need a one-on-one sit down, where they tell me the drugs and I take my own notes. That’s how I learn! But maybe in a week or so I will have it all sorted out.
I am learning that most of the inpatients on the cancer floor have blood cancers. These are called liquid tumors. The solid tumor patients have shorter stays because after their chemo treatments they are administered a growth factor for their white blood cell count to come right back up. That’s because their white blood cells aren’t sick! With Chloe, and with other leukemia patients, their white cell count needs to come back up naturally, without the cancer present. (The chemotherapy treatments wipe out the body’s immune system cells, particularly the white blood cells… and leukemia is a cancer of the white blood cells).
On Friday I asked one of the oncologists on rounds if she was our attending, because I was told on our first afternoon here, by the first attending I saw, that we would be assigned an attending. She replied, “No, I mostly deal with solid tumors.” She said we probably have an attending assigned but that she hasn’t checked our file about it specifically. (All of the attending’s are great- so we don’t care who ours is- but I was just curious to know). What’s an “attending,” you ask? It’s a board certified specialized doctor (oncologist, cardiologist, general surgeon, etc) who has completed 4 years of medical school, 4 years of residency, and then at least three more years of specialized training in their chosen field. The doctor we have had the most contact with is a fellow named Amanda Winters. A fellow is someone who has completed their residency and is studying to be an attending. Residents are the ones who are fresh out of medical school (i.e., undergrad) and just learning the ropes. They rotate through all the floors and departments at the hospital, so they can learn about everything, and then they pick a specialty, which is their fellowship. Once they finish their fellowship, they can take boards and become an attending. Having watched every single episode of Grey’s Anatomy myself, I have felt quite surreal this past week, integrating what was before this a medical hierarchy that I only watched on tv. Now I am living and breathing it.
Chloe is also learning about other protocols, which involve brushing her teeth and rinsing with mouthwash a certain number of times per day, getting out of bed a certain number of times per day, bathing once per day, etc. Most of these procedures and protocols are related to hygiene. And these are the things I am expected to participate in. (Okay, now that I say it that way, it doesn’t sound so bad. Maybe I’m a little less resentful than I thought.) It is absolutely imperative that we do everything we can to minimize her exposure to any germs, even normal bacteria and fungus found on her skin, because without an immune system, she could become dangerously ill during this period.
Her room is located in the HI-BMT unit. It is the east wing of the cancer floor and it stands for Highly Immune Compromised Bone Marrow Transplant. It is the most germ-secure wing in the hospital, from what I can tell. There is a secure double door which you have to buzz the nursing station to be let in. Even as a parent whose child is in the unit. Outside of the doors, before you go in, there is a hand-washing sink with foot pedals to turn on the water, where you have to wash your hands for 30 seconds (they have clocks so you don’t have to count seconds yourself) and then dry them, and then put on anti-viral cream and rub it in. When you buzz the intercom for them to let you in, you have to say who you are. Then they ask, “Did you wash your hands?” before they let you in. We have completely accepted this protocol. Let’s just say that I am now taking hand-washing and germ-fighting very seriously. When I am in the room with Chloe I often wash my hands before touching her. I just want to be sure. I have before this very much taken for granted our healthy immune systems!
And one more note on hygiene: I am a person who does not like to be wasteful of resources. I minimize the use of paper products and I recycle everything that I can. Here on this floor, her meal comes on disposable trays, and the whole tray is completely wrapped in cellophane. On the west wing (the less immune-compromised end of the cancer center), where we were for the first few days, they serve meals in washable plastic meal containers, much like you’d use for hotel room service. When you’re finished they pick them up. But with these disposable trays, you just have to throw them away. It hurts me a little bit, the use of resources, but it is to save the patient’s lives. So I am having to shift my mentality on the perceived wastefulness, too. It is no longer wastefulness, it is just protocol. Period.
And, lucky me, they filter the drinking water on this floor (to ensure lack of microbes), so at least I get to drink nice tasting filtered water and not city water.
This morning we will have a class on Broviak care. Her Broviak is the chest tube/IV catheter that was surgically implanted in her chest. The tube is internally inserted into a large vein (the inferior vena cava) which provides blood return to the heart. The medical staff use this device to administer medications, including all of her chemotherapy; they also draw blood through these lines. We will learn daily and weekly care of her Broviak lines: how to change the protective dressing weekly, how to disconnect, disinfect, and cover the IV catheters and the dressing up with a special bandage before a bath or shower. She won’t be able to submerse herself in water while she has this thing in. She might get it out before summer, I was told.
Today we find out the “roadmap” for her care, and what it will look like beyond these first 2 months. I can see this first month going by smoothly, in anticipation of getting to go home for a week or two. But then we have to turn around and come back here and do the SAME chemo round over again. Another 10 days of chemo followed by another 2-3 weeks of waiting for her white cell count to return. Maybe it won’t be as dreadful as I think. By that time we will have her care down to a routine. But starting chemo again after a break feels sort of tough.
She had a really good day yesterday. She ate a good breakfast of blueberry pancakes. This took about 2 hours, as she was putting off having to take her meds. Several hours and time-limits-set later, she finished her meds. Then she got to Skype with Orea, one of her best friends. She was so animated during the whole thing. And this was great practice for the two of them, because in March her family is moving to South Africa for a couple of years. So Chloe and Orea can get used to the video chat thing while they are not so far apart.
Afterward we walked down the hall to the play room (in her unit) for a while. Chloe was happy to be in there. She played quietly for about 30 minutes, but then her stomach started bothering her. The fellow we spoke with that morning had told us it would be a “big day” that day, because she was receiving all 3 chemo medicines that day (3 of the first 5 days of chemo- every other day- are like this, and the other 7 days she just gets one chemo drug 2x/day). I had forgotten that he had warned me about this, and so I didn’t recognize what was coming when she said her tummy was starting to feel like a “one”. (They have a visual pain scale for her to look at- it consists of a series of faces looking more and more grim as the scale progresses). I don’t think she was able to fully communicate with me the actual severity of the nausea she was feeling because when we returned to the room she started vomiting. Several times. It’s hard to watch her feel so uncomfortable, especially knowing that the vomiting is happening as a result of some really nasty chemicals she is receiving. For me, these are not side effects; they are just effects. The drugs are doing the healing for her but they are also making her miserable. That’s no side effect by my definition. The nurse explained to me that when a parent watches a child suffer, they often perceive the suffering to be worse than it is, because they are the parent and the care so very much for their child. So this really helped me. I will keep this in mind! As for Chloe, she is just “in it” and experiencing it and taking it as it comes. They had to give her a couple of anti-nausea meds which knocked her out. She probably really needed the rest. She slept right through her adjustment that evening! The chiropractic community in Denver is joining forces to make sure someone can get to our hospital room several days a week to care for all of us. I have let the nursing staff know when someone is coming. They don’t even blink when I tell them about it. There is so much grace present in this for me. The gratitude I have for these docs (chiropractors) and their care and willingness to serve us is beyond words. I only hope that I can pay this service back to a family in need one day.
On a final note, the good news is that she has not spiked a fever since Friday evening, after her first round of chemotherapy. Fever is a “side” effect of chemotherapy, and it can also be indicative of an asymptomatic infection (blood infection, I think). So no fever is a good sign (to me) that her body is doing well. I’m so glad she is getting some great chiropractic care, as it helps her nervous system regulate the rest of her body functions.
The doctors just came in for rounds, and they are very much pleased with how she is responding. The number of cancer cells in her blood are plummeting. They think she’s doing just GREAT! And so do we.
Steph and family