June 19, 2014 Thursday
Today was one of those days. I have chemo dripping in all day, the ifosfamide. I normally feel tired while the chemo drips in. I just felt plumb tired all day. So I slept until noon, but then made myself get up and log into work for a while. I didn’t want to sleep all day for fear I can’t sleep tonight. So I’m getting into the rhythm of chemo treatments again. Some days I have the world by the tail and could tackle whatever comes my way. Other days, I’m so tired I just want to pull the covers over my head and hope the rest of the world forgets about me. Today was the latter.
My time of worship today was in the central nurses’ station. The 7th floor consists of a central nurses’ station/lobby area, with 4 hallways heading out from the center. While going out on my daily tramp of the 7th floor halls, I found that there was a violinist in the central lobby playing music. So I sat down on a seat in the central lobby and leaned back and relaxed with the music. She even played some hymns! That violinist just made my day! Every day something a little special has happened. On Tuesday I found the keyboard in the lounge. Yesterday, my cousin Evangeline sent me a recording of “Between Here and Sunset” that she had played on a keyboard. And today I got to hear a violinist play! Maybe this gives you a bit of a hint of how much music means to me. 🙂
Today has been largely uneventful. The most eventful thing is that I am having practically no side effects! Aside from being tired, which is very normal, I don’t have mouth sores, funny taste in the mouth, or nausea! Hallelujah! I think all the prayers going up on my behalf are smoothing the road so far for me. Thank you if you’ve had a part in those prayers. Time will tell how I continue to do, but maybe I can miss most of the worst side effects. I sure hope so!
So here’s the scoop. The last dose of etoposide was given to me at 3 pm today. It’s just the ifosfamide still dripping in now. That will complete around 9 pm tonight, give or take a little. And that’s the last of the chemo drugs for this round! So that means I get a night off. If everything continues to go well, I will be discharged tomorrow sometime. Discharges take forever, so I may not be discharged until noon or later. I sure hope it’s sooner rather than later.
I will have to pick up some prescriptions at the hospital pharmacy on my way out. And I will have to return to Hershey Medical Center Saturday morning for the neulasta shot to boost my white blood cell count. Expect me to be moaning and groaning over the achy bones and muscles it causes. It feels a lot like a bad case of the flu. Only worse.
June 20, 2014 Friday
I am waiting to be discharged! It is currently around 12:30 pm. The discharge orders have come in, so now it’s simply waiting on the nurse to come in and take the needle out of my port, give me my discharge instructions, get dressed, and then I’m out of here!
I had kind of a weird night. Though I was terribly tired last night and settled down by 7 pm, I couldn’t sleep until nearly 9. Then I woke up at 2:30 am and didn’t have any success sleeping afterwards. So after fighting to get back to sleep for nearly 45 minutes and not succeeding, I woke up properly and had my quiet time with God as part of my “song in the night.”
The verse at the top of my devotional for the day was out of Isaiah, so I paged through the book of Isaiah in my Bible, reading the many highlighted verses and notes I have pasted everywhere. Isaiah has so many gems tucked away inside of it. Isa. 49:10 inspired me: “They shall not hunger nor thirst; neither shall the heat nor sun smite them: for he that hath mercy on them shall lead them, even by the springs of water shall he guide them.”
I laid there and thought of the mercy of God, and how good He has been to me. He waited to bring me to a stem cell transplant until I was ready to handle it. Even a year ago, had I needed to be at the place where I am now, I would have faced this whole process with so much more fear, frustration, and anxiety. Now, because of the work God has done in my life in the past year, I’m able to face it all with so much more equanimity and a sense of adventure. And so far, the mercy of God has kept the side effects minimal and my first round in the hospital has been a relative breeze. The mercy of God is our lifeline.
Finally I managed to fall asleep around 4 am this morning, but then, of course, got woke up by the nurses every hour after that for vitals, blood samples, and breakfast, just at the time when I felt like I could have settled down for another 4 hours of sleep! It will be good to be back home where my sleep doesn’t get interrupted!
When I finally woke up properly at around 8 this morning and ate breakfast, I wasn’t sure that I felt too great. Mainly I’m just really, really tired, with a medium case of “chemo brain.” In other words, I feel sort of half with it, kind of confused, a little hard to focus, like I’m half in the world and half out of it. No surprise there. Such symptoms are the side effects of ifosfamide, and supposedly they resolve themselves within 72 hours after receiving the drug. So maybe in a few days I can feel normal again.
But after eating breakfast, opening up the blind on the window, seeing the beautiful day outside, and showering and combing, I decided I felt more like a person than I had and that I could head down to the lounge to play on the keyboard again. This time I could go without Frankenstein, my IV pole! Yes, I was unhooked from all my IV lines last night after the chemo completed at 9 pm!
Going on walks with Frankenstein usually meant getting more exercise than I bargained for. My room is at the end of the east hallway, and the lounge is way down at the end of the north hallway! By the time I got to the lounge, Frankenstein would start beeping because of some kind of ailment: air in the line, kink in the hose, or something. Then I’d have to make the trek back to my hallway so my nurse could fix it. This morning I didn’t have any of that. So I played out of the Christian Hymnal for at least an hour. There is something so calming about music to me.
Guess I never really did explain what ifosfamide and carboplatin are, partly because they aren’t so easy to explain. Ifosfamide is called an alkylating agent and is derived from mustard gas, of all things. It kills cells that are in the resting phase rather than the dividing phase, which means it can kill about any cell! No wonder low platelets are a concern!
Carboplatin is a metal salt, specifically a platinum metal salt. Metal salts are produced by mixing a specific metal with an acid and potash. Metal salts are most often used in the production of fireworks! Obviously, chemo drugs are not much better than poisons. Makes a person shudder if you think about it too hard. I do think it is amazing how tough our bodies are. They put all this stuff through me and my body flushes most of it out within 24 hours. We are fearfully and wonderfully made.
I’ve been let out of jail! I was discharged around 1 pm. We stopped to pick up some prescriptions at the Cancer Institute pharmacy at the hospital. Then Mom brought the car around and we loaded up. They gave me all the normal precautions at discharge. Call if I get a fever. Be careful of cuts and bruises because of low platelets. (My blood counts are still all in normal range, so no big deal now, but they still want me to be aware of it.) Rinse my mouth 3 times daily to guard against mouth sores. Take my temperature 4 times a day.
Most of it is old hat since I heard it all when I received chemo 2 years ago. Even so, prevention is always better than damage control, so I will do my best to pay attention and take care of myself. If the white blood cell counts fall too low, I will be considered neutropenic and will need to go on a special diet of cooked foods and very well washed and peeled raw foods to cut down on germs. Neutropenic means I don’t have much of an immune system. As of now, everything is great, and we hope to keep it that way.
It’s good to be home and relax in my own recliner. The breeze is just right today, and I can listen to the bird songs. I still feel kind of “chemo brained,” but not as bad as I did earlier today. I told Mom I’d like to go out to eat Chinese tonight for supper. If I don’t have enough energy, we might order take out. If I become neutropenic, I can’t get restaurant food because we have no idea what the quality control is like at a restaurant and the concern would be the germ factor. So I’m going to take advantage of my normal diet while I can.
I am planning on staying on my no carb/no sugar diet as much as possible. I am modifying a few things, which basically means just cheating a little more, though I’m still not doing sugar. Of course in the hospital I had to accommodate to what they provided. However, over all, they had healthy options, and I just didn’t eat the desserts they provided. I’m also staying on my supplements as much as possible. They told me I can do whatever vitamins I like, but that they can’t vouch for how herbs will react or not react with the chemo drugs. I figure that I will give my body a few days to flush the chemo mostly out, then probably add the herbs and other supplements back in. After all, it only makes sense to stay as healthy as possible in every possible way.
I have no restrictions on going away, having visitors, or how much I can work. Basically, they just told me, “Use common sense.” I’m supposed to find my own rhythm for how much I can handle or can’t. Of course, stay away from obviously sick people, but as this is summer and not cold and flu season, it’s not a big deal. For those of you who have wondered if I can have visitors, or need to be in isolation, yes to the first and no to the second. I can be “normal.” The time when the isolation may go into effect would be during or after the hospitalization for the actual stem cell transplant. These 6-8 weeks leading up to that up are not a huge concern.
I must say, I’ve had no trouble with being bored. Between trying to work a little each day by logging on, typing up these emails, playing the keyboard, and just plain taking care of myself, I’ve not had time to get bored. I really don’t expect that to be a problem in the next weeks either. Logging onto work does make me feel productive and keep me involved, so I aim to do that as much as possible. One of my coworkers will be coming out Monday morning hopefully to help me get my home work station set up so I can work efficiently. I’m really hoping I can actually physically go into work within another week or so. But I won’t push it too hard.
Tomorrow Mom and I head back to Hershey for my neulasta shot at 1:30 pm. I also have to get a blood test done once a week to ensure my blood cell counts don’t drop too low, but I can do that at a lab close to home and they will fax the results to Hershey. Then we don’t have to run so far. That’s one nice thing.
June 21, 2014 Saturday
I think I’m feeling alive. 🙂 It’s been a long time since I’ve been as tired as I am these days. My night was kinda strange again. I dreamed weird dreams all night and didn’t sleep the soundest. I wonder if it’s because of the steroid I’m on. We picked up Dexamethasone, a steroid, at the pharmacy yesterday that I’m taking twice a day for three days. It’s supposed to help with side effects, but steroids have a way of making my mind go at 90 mph. I had a little trouble with that when I was on prednisone during my chemo 2 years ago.
So between the chemo brain, the steroid, and the slight sinus cold I’ve contracted, I feel kind of out of it. I did decide though, that I feel better if I just forget about how I feel and focus on doing what I can. Hence why I’m typing up this email right now. I have some other odds and ends I really ought to make myself do, so here goes!
As far as the schedule for the next few weeks, it’s basically going to follow the general program I had outlined in one of my first emails. I will now have a break of 3-4 weeks until my next chemotherapy. How long we wait until the next treatment is all dependent on how well I do. Then I will again be admitted to the hospital for the next dose of R-ICE chemo. Once again, it will be another wait of 3-4 weeks before stem cell collection and admittance to the hospital for the high dose chemotherapy and the stem cell transplant.
Right now I can’t imagine recovering enough to take another dose of chemo in 3-4 weeks, but I know I will. I have too much “bounce back.” 🙂 The nurses commented on how tough I am. I think I’m going to need every ounce of that toughness in the next few months.Tomorrow my church has an all-day conference. I’d really like to go for at least one session, or part of a session. It’s not good to do too much, but I will also get down if I’m just home too much without anything to do but feel tired. 🙂
And that completes the letter for this round. I’m hoping to continue sending out email updates about twice a week. Stay tuned…
God is STILL good.