My infusion was on a Friday. I felt completely fine when it was over – absolutely no nausea! Hurray! I had some severe indigestion late that night, but I was fine again on Saturday morning. But come Sunday, I felt as if I’d been hit by a truck. I had no energy and I started feeling uncomfortable in my bones. By Monday night, I realized I had a slight fever – maybe 100 degrees. Tuesday was worse; the fever hit 101 and I was miserable. My bones ached like crazy. Went to the doctor for a blood work up and everything was normal. Wednesday – more of the same. Saw the doctor again and she prescribed antibiotics. Thursday – fever is still present and I am crawling out of my skin with bone pain. The doctor decides it’s time to admit me to the hospital. I am to start off at the infusion center receiving IV antibiotics while they try to get me a room in the hospital. They are afraid I have some kind of infection.
Things were going pretty smooth in the infusion center, until suddenly I start to feel dizzy and warm. A nurse from across the room sees I’m feeling uncomfortable and comes to check on me. “Uh-oh,” she says, “you’re having a Red Man reaction.” Apparently my face was turning bright red and I felt like it was burning. All the nurses gathered around to view the novelty of my “red man” flush. They quickly pushed some Benadryl into my IV which caused me to get even more dizzy and light-headed. As soon as the infusion was done, I stood up to go to the bathroom. As soon as I got there, I knew I was going to be sick. Yep – puked my guts up. It was horrible. Please explain how I can get through 4 chemo treatments without puking, yet some simple antibiotics and Benadryl make me hurl. Geez!
The hospital is at capacity and they don’t have a room for me. Rather than wait around for hours, I chose to go home. I was feeling pretty miserable and there was more puking… I’m not really sure why. I still had the fever and bone pain. I had a hard time sleeping and somewhere around 2:00 a.m. I finally collapsed from exhaustion.
We return to the hospital Friday morning to check in. I am rested and feel a little better. They check me into a room and the nurse spends the next HOUR asking me the most inane set of questions. Do I have transportation home? Do I have air conditioning, do I have the means to buy proper nutrition, who does the grocery shopping in my home? Please! In front of my husband, she asks me if anyone makes me feel unsafe in my home. My answer – “Sorry – I can’t talk about that right now.” How would you like for the staff to address you while here? “Your Royal Highness would be fine.” What foods do you dislike? “Collard greens – I hate collard greens.” Guess what was on the first lunch plate they brought me? Collard greens!!! Why are they asking me all these questions!! Start the treatment already. I’m sick!
The first bag of antibiotics goes smoothly. The nurse says she’s leaving for lunch and will be back at 1:00 to hang the second bag. The second bag is the antibiotic that gave me Red Man flush in the infusion center. They told me next time I should slow down the drip rate from one hour to two hours. The nurse notes this instruction and leaves.
When she returns, she has the antibiotics in one hand and a blood draw kit in the other. I can just tell by her body language that she is feeling uncomfortable about drawing my blood. Sure enough, after 45 minutes of prep time, her stick failed and she had to get someone else to try. Argh. After 30 more minutes she returns with someone else who is able to draw blood on the first try. Good. That part is done. I now drift off to sleep. I wake up and watch some tv. Around 5:00, I look at my bedside table and notice that the bag of antibiotics is sitting there – she never hung it up!! For heavens sake – the whole reason I’m here is for antibiotics. It’s 5:00 and I haven’t even had one full dose of the prescribed treatment! But there’s more… After the nurse hangs the bag and leaves, Ben notices that the IV pump is set to administer the dose in one hour – not two as requested! Thank goodness he was there and knew how to read the machine or I would have been red and puking again!
The whole stay was full of little things like that. Because it was the weekend, I saw a different person every day. I never really knew who was in charge of my treatment plan. It was frustrating. One night, they came at 8:30 p.m. to take me for a CT scan. No one had told me a CT scan had been ordered or why. I refused to go until they had a doctor call me and explain what the test was about and why I needed it.
Every day, my white blood count continued to rise above normal levels. This rise is a signal of infection somewhere in the body – yet I didn’t have any symptoms other than the fever. All tests and cultures came back negative. By Sunday, I was fever free. Hallelujah – 7 days of fever was enough for me.
On Monday, the white blood count rose again but my temperature was normal. What was the source of this mysterious infection? Finally, a nurse practitioner came in and asked me if I’d had a Nuelasta shot with my last chemo. I did. “Oh – then that explains your elevated blood count,” he said. Some people apparently have a bad reaction to the shot that is meant to help rebuild your white blood cells after chemo. Some people can have a flu-like reaction. Since we couldn’t find an infection, it seems likely that the fever, bone pain and elevated white count are related to the Neulasta. But who can know for sure???
A second nurse-practitioner, who had never seen me before, completed the discharge papers to send me home. I know it sounds insane, but it's true.
The question now – what’s next? I sure as hell don’t want to go through all that again. Was it really the Nuelasta? Was it the chemo drug (taxotere)? Was it an infection? Can I take taxotere without the Nuelasta? If I can’t tolerate this chemo drug, then what? Do we go back to the first drug? What if I quit now? Have we gained anything from the four sessions that I’ve completed? I have a lot of questions. And it’s already time for another infusion next week. Ugh.
No. I don't want to do this any more. You took a fairly healthy young woman and made her really sick. This is starting to go outside my boundaries of acceptable risk. And yet, who wants to have cancer 5 years down the road and regret that you didn't finish the treatment. Would two more rounds mean the difference between life and death? This is heavy stuff.
Did I mention that my hair is falling out again? This time I think the eyebrows and eyelashes are coming out. Bummer.
Hopefully I will get some answers from my doctor next week. I definitely have some tough decisions to make in the next few days. All I know for sure - I feel great now and I'd like to keep it that way!!!
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3 comments:
I want to say something encouraging -- just don't know what it would be. Yuk! I am so sorry you had to go through all of that. You really are in my prayers. No one wants to have to make important decisions when they just survived a week like you have been through. Get some rest this weekend.
Sherri Jo,
I encourage you to pray for answers to your questions. This is way too hard to try to figure out on your own, and though doctors are smart and are a gift from God for healing us, they don't know everything (no offense, Ben), and they don't like to make our decisions for us.
I (and many others) are praying for God to reveal His will and guidance to you and just plain heal you (maybe you have already been healed, and this hospital experience was to show that you don't need the additional chemo, nuelasta, etc.). I can only imagine how exhausted, overwhelmed, and just plain sick of all of this you must feel. We reach a point where we don't want to think about it anymore and just want someone else to take over. You would be amazed at how freeing it is to pray and then just let it go. Let God take over. I don't mean just breeze through life as if you don't have a care in the world--stay informed and make informed decisions. But try taking it to a higher source and asking for answers, directions, comfort, and peace.
I am not trying to preach to you; I am just trying to offer some encouragement and a way for you to have some peace of mind about this situation. Don't try to carry it alone. Obviously you are not alone. You have Ben, Eli, family, friends, colleagues, doctors, etc. that are with you through this, but this is bigger than any of us, and none of us really knows what your situation feels like except you. But God does.
Didn't mean to get all heavy on you, but you said yourself that this is heavy stuff.
Do get plenty of rest and know that we are all thinking about you.
Much love, Cathy
SJ- We are sooo glad to hear you are feeling better. Chemo is bad enough without that fever. We have been worried about you. You are in our thoughts a lot. Tracy,Leland, & Taylor
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