Every time I sit down to write about the events that transpired over the weekend and then into the first part of this week, I find myself wrestling with how not to make this a 10,000 word post. In my head, it’s already an exhausting list of things and I still have a lot of emotions wrapped up in it – mostly being equal parts upset and also guilty. So I’m gonna do what I do best, I’m just going to spew it all out in a chronological bulleted list. So here we go!
- Jake left for a weekend-long bachelor party in the Dells.
- I texted him that I had a cough with yellow phlegm…which, although gross, is of importance because it’s on the list of “symptoms you need to call your doctor about immediately.”
- So I called my doctor. They told me I didn’t need to come in, but if I got a temp of 100.4 or higher over the weekend, I’d have to go to the ER. Otherwise, to check in with them on Monday if I still had the cough.
- Friday night, Jackson and I battled back and forth on whether or not he could sleep in our bed. He finally won at 1am when we agreed to stick to rules that he wouldn’t kick me and he’d stay on dad’s pillow. He was also coughing and had a runny nose (pretty sure that’s where I got my cough from).
- After about five hours of sleep, I woke up to a loud “THUNK” sound, immediately followed by the wails of our four-year old. He had fallen off the bed and blood was gushing out of his nose. It was like a murder scene.
- I rushed him to the bathroom and called my in-laws in-between his (and my) sobs to see if they could come sooner than they planned…like ASAP. It was their intent to be there in a couple hours, anyway, to bring Jackson back to their house for the day.
- While I had him in the bathtub, him holding a rag tightly to his nose, not wanting to move an inch, I called his doctor and was told it’s not likely he broke his nose. At his age, their nose is mostly cartilage and it would heal itself. However, I should keep an eye on him to make sure the bleeding stops and to make sure he doesn’t act funny.
- Soon, my father-in-law arrived. He suggested we call my husband (who I’d been keeping updated via text about the situation) and have him come home. I said, “No, we got this!”
- A couple hours later, we were still wiping drops of blood from Jackson’s nose and I called the doc again. She told us it would be a good idea to take him to the ER since the bleeding hadn’t stopped.
- We packed up into the car, and I texted my family updates. Their reply? “YOU CAN NOT GO IN THE ER, JAMIE.” They were right. The ER was the worst place for someone who was neutropenic as it’s chalk full of germs.
- We arrived at the hospital and I sent my father-in-law in with my little boy and sobbed the entire time they were in there. Being a mother who can’t comfort your child is maybe the cruelest thing ever for a cancer patient. I talked to the doc over the phone and all was good. The bleeding had stopped. Maybe some slight bruising, a possible fracture, but no intervention needed.
- We got home and I finally started to notice that I had the chills. The thermometer confirmed that I had a low-grade temp. Yikes.
- A half hour later, I checked my temp and it was on the rise. My father-in-law suggested we call my husband. I finally agreed. If I had to go to the hospital, I’d need my father-in-law here to watch Jackson, anyway.
- After a few unresponsive calls and texts to my hubby (I assumed he was out on the lake already), I called my friend to see if she could be my backup if things got worse before Jake got home. She agreed. And then agreed to come over right away…just in case.
- About 15 minutes later, my temp had officially had it’s first reading over 100.4. I called the doc (or whoever was on call on a Saturday) and found that the clinic was closed. I’d have to go to the ER.
- Twenty minutes later, I packed a couple things to endure a long wait in the ER and was on my way with my friend.
- As we arrived at the ER, my hubby was finally on his way. We ended up waiting in the waiting room for over an hour – and were still waiting when Jake arrived. He was in his swim trunks.
- Finally around 4pm, we got in and they started doing labs and x-rays on me. I wasn’t sure what we were in for, since this was the first time I’d been sick while on chemo. The “protocol” was not clear at all. And unfortunately, a lot of people made it less clear the more we talked to them. But I digress.
- Around 6:30, they told me surprising news – that I was NOT in fact neutropenic and that my initial labs and x-rays all looked great. I would be released as soon as my heart rate went down to a normal rate. They would give me more fluids to do that.
- So we waited. And I got my fluids. And my heart rate went nowhere. It continued to stay high.
- Finally around 8pm, the same doctor came back in to tell me that I would NOT in fact be going home, that they’d like to actually admit me to the hospital and keep me here until my blood cultures came back. They suspected it was just a viral infection, but my heart rate wouldn’t go down and they wanted to be on the safe side. How long would it take? 24 – 48 hours. But as the ER doctor said, “You’ll likely be out of here tomorrow.”
- I got into my room (a fancy hotel room where they wake you up several times a night, basically) and my fever started taking off. Jake was exhausted so he left around 9pm (Jackson was at his grandparents for the night). My fever broke around 1:30am.
- Talked to the doctors around 8:30 am. When asked when I could leave, they looked at me like I was crazy, “Well, the blood cultures take a full 48 hours, so not today, but most likely tomorrow.” I told them, “You know I was going to be released yesterday, right?” They did, and also told me that the ER doc lied and always made them break the bad news about how long I’d actually be in the hospital.
- Spent the rest of the day on IV antibiotics (just in case) and having my vitals checked regularly while binge watching TV or Netflix on my iPad with Jake.
- That night, I got some visitors – my old coworker and one of my good friends who lived nearby. Ended the evening marveling at the atrocity of gypsy wedding rituals (thanks for the laughs, TLC!).
- Also – no fevers on Sunday.
- Yeah! Going home day! I knew my cultures wouldn’t come back until the afternoon, so the morning was spent doing the same as Sunday – IV antibiotics and binge watching Gossip Girl on Netflix.
- The doctors twho came in the morning checked my vitals and asked how I’d been doing. They told me all of my cultures were negative so far and it was good to see I hadn’t had a fever for over 24 hours. The also said they’d let me know when they heard back on the rest of the cultures.
- Around 4pm, I packed up all my belongings so I’d be ready to go when they discharged me. Jake would be here around 5pm to pick me up.
- Around 4:30pm, a nurse came in to check on me. “They told me to pass it on that you’d be staying another day, but you probably already heard that right?” No. I hadn’t. And I was crushed. Seriously, no word from anyone all day, at least, not since the doctors came in that morning. I asked the nurse why exactly they wanted to keep me another day and she didn’t have that information.
- After she left, I let the tears fall. I was beyond livid. All of my cultures were negative (I had the nurse check that, at the very least), I hadn’t had a fever in over 24 hours and yet I was still in the hospital. What gives?
- I didn’t know how to get a word to the doctors, so I decided to start with my own oncologist. I emailed him my disappointment, not just with the decision…because no one had provided ANY rationale, but also with my disappointment in how this information was communicated to me. Did they get that I had a family to get back to? Did they understand that I was a human…not just numbers on a chart and I desperately hated being hooked up to IVs in a hospital? If they did, they could have at least told me this news in person instead of making a nurse the messenger of this information.
- After calming down, I did understand that they were making a conservative call based on my unique situation, and that I couldn’t be mad at them wanting to keep me safe…but I still could be upset at how it was handled.
- That night, I got a call from my oncologist after he received my email. He was quick to apologize and agreed that this should have been communicated better and that he would talk to the team tomorrow about this. But he also was quick to point out that “this is the protocol for someone in your situation. I trust the team to handle these cases because I can’t be everywhere at once.” I reminded him that I didn’t know the protocol and that also, expectations could have been better set in that area too. Every day I kept being told what I wanted to hear…I’d go home today, I’d go home tomorrow, etc. etc. and it was frustrating to not be in on what this protocol was. When you say “48 hours” maybe say something like, “Well if that 48 hours falls late in the day, expect that you might be here until the next day.” Is that so hard? Not everyone knows how hospitals work…although, being my third time in three months, you’d think I’d know a little better by now.
- After settling down, I enjoyed some more visitors and we laughed at funny snapchat filters.
- My oncologist stopped by for a quick check in. Said he would talk to the team about me getting out as soon as possible today.
- Around 9am, the team came in and agreed to start the discharge process.
- I talked to family and friends about getting a ride home, but no one was expecting it so soon and wouldn’t be to get to the hospital until noon.
- To the dismay of my family, I took an uber home at around 10:30. There was no way I could stay in that hospital one second longer. It was my good week! I needed to get home ASAP!
As for my next treatment, will chemo still go as planned tomorrow? Well, the doctors were hopeful, but it won’t be decided until my labs come back and then my doc will make the final decision. Although I’m not a fan of chemo, I’m not a fan of prolonging treatment so fingers crossed it still happens tomorrow!
So that’s everything. I consider it a success that I got it all down in less than 2,000 words. Now I plan to enjoy the last few good hours of my good week while I still can…even if I do still have a wretched cough.