Sorry I haven’t posted much in the past couple of weeks. I have really been spaced out on painkillers. It’s really crazy to lose track of hours (or days!) like that. But the pain finally seems to be receding some, so I’m hoping to be off the painkillers in the next couple days. I have a CT scan in the morning to determine the rate at which my cancer has grown and establish a “baseline” that we will compare to from here on out. After every two cycles of chemo (six weeks) a new scan will be done and it will be compared to this one that we are doing tomorrow. If the cancer is shrinking or staying the same, we know that the chemo is working. If it is growing, we might have to try something new.
I met with the nurse a few days ago to go over the chemo regiment. She went through a whole bunch of different scenarios and a whole bunch of different over-the-counter drugs that I should take for each situation, but I can’t for the life of me tell you which ones are to be taken when. Thank goodness I recorded it, so I can play it back. I do know that I will show up for my chemo and they will take my blood. It will take about 45 minutes to get the blood counts back, and they won’t even mix the chemo drugs until they know my counts are high enough to handle it. If they are, then they will do the pre-chemo drugs first, then the chemo, then the after-chemo drugs. I can’t remember what they all are, but there’s a steroid in there somewhere and a couple of different antihistamines. One the of the drugs I’m taking can cause anaphylaxis (in about 3% of people) so they are extremely careful when administering it. I’m supposed to tell them if I feel my chest constricting even a little bit, so they can immediately stop it. If that happens, I’ll have to take a different drug.
One thing I do remember from the nurse’s meeting was that on Day Eight I’m going to have to wear gloves and keep my fingernails in ice water for the entire treatment, so that my fingernails don’t fall off! Say what? Yep, apparently keeping them in gloves and in ice water keeps them from falling off, so that’s what I’ll be doing. No cross-stitching on that day! I asked about toenails, but evidently they don’t have that problem with toenails, so thankfully my feet won’t have to be ice water as well. Sigh. I’m just glad we’re members of Audible, so I will have audiobooks to listen to.
My best friend has decided to go with me for my first treatment and I’m so thankful. I’m so lucky God brought her into my life.
Hopefully, I’ll post a little more after treatment on Friday, but for now I need to go drink that barium crap. (And yes, crap is the right word for that stuff.)
My prayer pager has been going off like crazy in the past week! Those of you who are praying for me (and letting me know about it): thank you, thank you, thank you! I was able to eat breakfast today for the first time in two weeks and I have high hopes for lunch as well :- )
For those who have just joined this blog and don’t know what I’m talking about, my prayer pager is a ministry my church does. The church has several pagers (you remember beepers from the nineties, right?) that they pay for. They give them to those in the church (and I think in the community as well) who are in need of prayer. When someone prays for me, they can dial the pager number and leave “111” as the message. Then I know someone has prayed for me. It’s really pretty amazing and very uplifting. So thanks for the prayers!
Really. Tonsillectomies are no joke. I have to either be in lots of pain or hopped up on pain killers. After several days on painkillers, I tend to feel like I’m in a cloud. My entire day yesterday is in a cloud. I finally gave in and busted out my Fentanyl patches. My hope is to experience less pain without the fuzziness. It will take a couple of days before it kicks in, but it makes me wonder – how does someone who doesn’t have access to the painkillers I do get through this? I have great hope that it will begin to recede soon. My doctor said two weeks of recovery and Friday will be two weeks. Maybe. Hopefully. I don’t want to complain, but this is truly where I am and where I have been for the past nine days. I’ve always tried to be honest on this blog, so there it is.
Sometimes you just have to laugh through the pain. Today was one of the most painful days I have ever had, and that includes before the cancer was taken in surgery. I finally just asked my husband to take me back to the emergency room and I spent the afternoon on painkillers and fluids again. This time, though, they gave me a big steroid shot and finally I’m starting to feel better. I was able to eat mac & cheese, drink three very large cups of water, and eat a bowl of ice cream. My ENT wants me to follow up tomorrow. My kid has been happy-go-lucky and loving all day. He had surgery about two weeks ago on his adenoids and ear tubes. Afterwards his breath was kickin’. Man it was rough! Since I have had my surgery, my husband keeps sniffing the air when the two of us are together and asking if my son is poopy. I never smell anything and I told hubs I was starting to feel paranoid. Today he actually apologized to me and said, “Babe, I think it’s your breath.” LOL! He’s been kissing me and sleeping beside me and holding me and it took him this long to realize my breath was kicking? Oh well. Considering the amount of pain I’m in, I doubt there’s anything I can do about it. I love bubble gum but my jaws ache just thinking about it, and forget about mints. I just have to hope that my breath will clear up sooner than my son’s did and try to only talk to people who like me till then! 🙂
On the agenda for this week:
- Monday – follow-up with Dr. B. (assuming he can fit me in)
- Tuesday – “nurse education” at the hospital where I can learn more about the chemo I’ll be taking
- Thursday – decisions, decisions. Meeting with Early Intervention for the one-year evaluation of my son’s progress and a determination about whether to continue services at the local elementary school or to get him private speech lessons.
*Also hopefully on the agenda, lots of food and ice cream to make up for not eating the entirety of last week.
Yesterday, my husband spent the day at work while I was in the emergency room. Similarly, my mom stayed home (furious at the ENT for not prescribing me another antibiotic when I had a reaction to the first one). It was important to me that they both stay where they were. Why? Because I have a “new normal”. Everyone goes through phases in their life where they experience a new normal. Moving to college, starting a new job, getting married, or having a kid will all rock your world and create a new normal. Similarly, having a chronic and serious disease shifts your reality. For most people, the emergency room is a big deal. They want people with them, people waiting in the waiting room, and lots of attention. This is my third (or fourth) emergency room visit in the past couple of months. For me, it has become part of my new normal. I expect it will continue to be when I start chemo.
I find the emergency staff extremely professional and courteous. They almost immediately put me in a room by myself and see that I am as comfortable as I can be. They review my patient history and are as caring and polite as a person could ever hope for. But they are doctors and nurses in the emergency room. They are unable to attend to only me. As such, there are long periods when I am by myself. I generally nap, but if I am feeling up for it, I have books to read or puzzles to work on. Yesterday my nurse rocked. She was amazing. But all her patients were discharged at the same time. As such, when she told me I could go home around three, it was after four before we got out of there. My husband showed up around four and (I love you honey) drove me crazy! He was soooo antsy. My mom, had she been there, would have been going out of the room trying to see what was going on.
As such, it is simply easier to have someone drop me off at the hospital and have someone else pick me up later. I don’t mind it, really. My mom and my husband are my primary caregivers. They have a lot of stress on them when I am sick. And there will be times when I am truly sick. Yesterday was not one of those times. Yesterday I went to the doctor, he decided I was dehydrated, he sent me to the hospital, I got fluids, I went home. This is part of my new normal. If it is something I can handle on my own (with rides from friends), I want to do so. This way my caregivers can focus on the really bad times. I have an amazing group of people who have volunteered for this sort of duty, and I’m in process of getting them all in my phone. We just all need to adjust to the new normal.
I woke up this morning about 5:15 thinking, “Hunh, my feet are cold. Maybe I should put on some socks.” 45 minutes later, wrapped in all the blankets and my human-heater husband yet still shaking violently, I knew this was going to be bad. I crawled in the bath as hot as I could stand it and turned on the space heater in the bathroom. Two hours (and three refills of hot water) I was finally able to get out. My fever was 103.5 at that point. It seems to sitting around 100.8 right now, but I’m headed in to the doctor as soon as he can fit me in (9:45). A good friend from church is taking me in, and hopefully I can get in and get out, but I’ll keep you posted if they decide to admit me. Prayers appreciated!
UPDATE: I spent almost all morning at the doctor’s office while he consulted with my ENT. They decided I was dehydrated and needed fluids. They sent me in to the ER and I spent all afternoon on fluids, painkillers, and an antibiotic. They sent me home about four o’clock. I feel soooooooooooooo much better and am now eating some real food!
If you want to know what life after tonsillectomy is like, check out this guy’s posts. He makes me laugh. He had a tonsillectomy a few days before I did, and is apparently having quite a time with the recovery. My pain tolerance is a little more than his, and I don’t have quite the effects from the Loritab (probably because I’ve been on it for months before now), but for the most part what he is saying is what I am feeling.