Tag Archives: steroids

Feb. 23.

Infusion Day

Now that I’m a hair less exhausted and might be able to construct a legible sentence or two, I thought I’d share how my infusion day went. Because of the length of time the treatment takes, I have to be to the doctor’s office by 8:30 AM which means leaving the house around 7:30 … just in case I run into traffic. I had prepared better for the day, since I knew it would be closer to 8 hours than 5-6, I brought some things to nibble on as well as things to drink. The chemo nurse who had been there the last time wasn’t there, but the nurse who usually takes care of me was running the chemo room, so all was good. She got me all hooked up and tested the port, but then nothing was going in. It took a bit of finessing, but she got it going and then came the first question of the day.

As I am allergic to Benadryl, they give me a steroid instead to help minimize the allergic reactions … and I do need it. The problem was that the preceding treatment, the chemo nurse charted that she had given me 10mg and I know my doctor had given instructions for 4mg. I recalled the conversation verbatim, and the doctor agreed that is what she had said, but we didn’t know whether the chart had been incorrectly marked or whether I had been given the 10mg vs. the ordered 4mg. (The chemo nurse is no longer with my oncologist, and it’s probably a good thing if she cannot follow what the doctor orders.) So we decided to proceed with the 4mg. That settled, I pulled out my laptop, settled back in the chair, and started working on some things.

I always bring stuff to work on while I’m there because I don’t sleep easily or well in that type of environment and can’t sit there and stare at the walls doing nothing. So I have my laptop and can work on whatever I have the brain power for (which this time around wasn’t much). I also can hop on the internet and do some surfing or watch a movie, as I usually bring one along. The morning went by quickly and then it happened. I made the BIG mistake of invoking Murphy’s law by making the following statement: “Wow, it’s going fast today.” I said it after the second bottle had completed, so should have been half way done and I had hopes of being done early. Murhpy just gave a huge evil belly laugh and said, “Not so fast.”

With the third bottle hooked in, I figured it would be a good time to watch the movie I had brought with me because I really was too tired to do much else. So I popped in Spy and began watching. I had seen Spy before and thought it would be a nice, light-hearted watch. I enjoy Melissa McCarthy and though the film itself is on the spoof/ridiculous side figured it might not be quite as funny the second time round, but still something to take me away. Boy, was I wrong. I had forgotten to factor in my state of exhaustion, so it was like watching the movie after a few too many drinks. It was hysterical. I nearly snort-sprayed my monitor on lines I KNEW were coming up. And it was difficult to keep from laughing out loud (I didn’t want to wake anyone who was napping by cackling away.) I could not have made a more perfect selection for the day. Anyway, if you’re utterly exhausted and want to watch something for giggles, I’d certainly recommend it.

Somewhere toward the end of the movie, I noticed that my drip wasn’t doing it’s thing and dripping. It was still working, but going extremely slow. I didn’t think we’d ever get that bottle done with. So, instead of being on the fast track, I was going to be done later than usual. By the time all was said and done, it was after 6PM before I left the doctor’s office. Then I had to swing by the pharmacy to drop off a prescription for some sleep assistance. I haven’t been sleeping well at all of late. An hour at a stretch, with a lot of wakeful time in between, so it was time to get some help.

I arrived home more than 12 hours after I had left, just in time to take my chemo. And by the time I did get home, I noticed something. My left wrist felt almost completely numb, as if it had been broken, and both ankles were going numb. Definitely an allergic reaction. And then it clicked … earlier I had been extremely antsy and couldn’t stay seated in the chair, which does happen with me from time to time, so I didn’t think anything about it, but realized, it was a precursor to the swelling happening by the time I arrived home.

Knowing what was happening, I was able to get things under control quickly, but I think it answered the question of what dosage of the steroid the chemo nurse had given me the last time. So, my next visit, the doc and I will have a chat about how to best handle the amount.

The picture of Mount St. Helens is a reminder for me that even after devastation, the tenacity of life can conquer.

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Jan. 30.

Unexpected Infusion

I am getting to this post a little late because things happened fairly quickly and I have been on the tired side of late — kind of like the kitten passed out in the picture. After my latest cold, which took a few weeks to get rid of, I went back on my chemo treatment and when I went to the oncologist, while my leukemia values had improved, my immune system values had not, so she decided to move forward with a treatment to boost my immune system. Remember how happy I was to be skipping the chemo chair this time around? Well, I will now be going for a monthly infusion to help my immune system rally so I am not so prone to getting ill. Eight hours and four bottles worth once a month.

But I will continue to do as I did before … Bring things to work on, bring movies to watch, and basically keep occupied during the process. Rather than be upset that I have another hurdle to go through, I am choosing to be happy because this will help me get well. And if I respond as well to this treatment as I am to the chemo, then I’ll be back to normal in no time at all. And I was absolutely delighted when they hooked up the port and it worked beautifully and didn’t even require flushing. I wasn’t sure whether the port would need to be cleared out or not because it has been nearly 3 years since its last use.

The biggest issue, per usual, was being allergic to Benadryl. My oncologist always gets nervous when starting a new treatment because part of the standard protocol she uses is to give allergy medication in advance of the treatment to minimize the potential for allergic reactions. And I am allergic to so many things … Then came the question as to whether we would use the steroid as we had with the treatment 2013/2014 instead of Benadryl. Slight problem, there were contraindications for the steroid with the chemo. Except because of what the contraindicators were, we decided to go ahead and use the steroids. I’m glad we did because I would have had an allergic reaction.

The biggest issues encountered with this infusion were increased fatigue levels and some joint pain. Fortunately, the joint pain has been manageable, and I have rested more this past week, hence my not posting this immediately. I finally caught up on rest yesterday and am not feeling as fatigued today. I will find out the results of the infusion and how the chemo is going tomorrow … so stay tuned. 🙂

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Dec. 19.

Cycle 2, Day 3 – Hydration

My Status: Feeling okay
Mood: Good mood in progress

Today was pretty smooth, only 4 hours (supposedly 3 hours per my scheduled times, but we’ve had to throw the general time frames out with me). Nothing but hydration and the injection to boost my white cell counts. The injection is to help boost my immune system and hopefully keep me from getting sick after the treatments. But I have to watch for any sort of reaction, especially after this round of chemo, because it could cause difficulty breathing, flu-like symptoms, etc. So for the next couple days, I have to monitor my temperature and call in if it goes above 99F. And since some of the symptoms of an allergic reaction are the same as what I’m already experiencing from the reaction on Tuesday—puffy face and eyes, mild shortness of breath, etc.—it may be a bit difficult to distinguish whether the reaction is still residual or coming on for a bit. I’ll get it figured out. And I did do well with the injection the last cycle.

The worst of it should be joint and bone pain, and here’s hoping the knee doesn’t blow up again. I don’t want that to look forward to each time I go through a chemo cycle. Especially since the way to control the knee pain causes issues with my liver. Speaking of the liver, as soon as I can get some, I’m going to try drinking at least a cup of dandelion tea each day. Dandelion tea is supposed to help increase liver function, and I have okay’d its use with my doc. I certainly don’t want to do anything that will hinder this process, so everything, down to herbal remedies will be confirmed before consumed.

As with the last cycle, by the time I hit this morning, I was carrying approximately 7 extra pounds of water weight. The water retention because of the steroids is going to be an ongoing battle. I am doing my part by drinking as much fluids as I can … alternating tea and water. Each day during the chemo, I drank a huge thermos full of tea and at least one 17 oz. bottle of water. The longer I was in the chair, the more water I drank.

This cycle I have noticed a definite difference in my energy levels. I’ll be going along fine, and then I’ll hit the wall, and when the wall is hit there is NO keeping my eyes open. I have to lay down before I fall down. Part of that is likely due to the reaction to the drug on Tuesday, at least I’m hoping so. I normally am the sort of person to want to power through dips in energy, but I am listening (as if I had a choice this time) and getting the rest when I need it. Fortunately, an hour does the trick to rejuvenate and I’m ready to roll again for a few hours.

I don’t have my schedule yet for January, so we’ll have to sit tight for another week or so to know when that’s happening, and I’ll have to go in right before hand to have the port to put in to make things a little easier for everyone with my small, deep, slippery veins. One woman in with me today had similar issues with her veins, and the port was suggested, but she declined. She’s on her (hopefully) last chemo cycle and didn’t want to go through it. But for me, with still two-thirds of the way to go, it simply makes sense.

The picture at the top was a seasonal snowflake in honor of hydration day, plus I thought the color was fabulous.

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Dec. 18.

Cycle 2, Day 2 – Chemo

Christmas Candles

Christmas Candles

My Status: Tired
Mood: Doing better

Another long one today, although we did manage to skip the whole allergic reaction thing. That is a huge positive. But because of the allergic reaction yesterday, the decision was made to run today’s chemo at a much slower pace to ensure there were no difficulties. End result was the chemo that should have taken approximately 3 hours took nearly 6. Another day eaten by chemo.

By the time I returned home, I was tired. Unable to keep my eyes open tired. I had a small bite to eat to keep the nausea at bay, and then crawled between the sheets. I dozed, but did not fall into a deep sleep. So guess who will be taking a sleeping pill again tonight??? If I can’t sleep when I’m that exhausted, then it is a necessity to get enough rest to handle the next day. The plan at the moment is to finish this post, have some tea, and hopefully zonk out for the night.

The after effects of the allergic reaction so far have been the headache last night, which was coming back on earlier this evening, but I’ve got it back under control, a bit of a sore throat, water retention, puffy eyes, congestion, and getting winded climbing the stairs. With the severity of the reaction, I count myself lucky. And strangely, this morning it was difficult to raise my left arm above my head. The chemo was in the right arm yesterday, so this seems a bit strange to me. Anyway, overall, doing well.

The candles at the top of the post are my symbol for hope. They are burning bright, keeping vigil, and signify tomorrow will be an even brighter day. Hydration should go well. One additional hurdle is that we are already having difficulty in getting good veins to put the drips in. So before the next chemo cycle I will go have a port put in, and the stress on my arms will be reduced for the remainder of my treatments. Easier for the chemo nurses, and easier for me. Win-win at its best.

And that’s it for today. Nothing much to say because everything went well, albeit slow.

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Dec. 17.

Cycle 2, Day 1 Chemo

My Status: Head-achy & slightly nauseous
Mood: Hanging in there

Today was long. Reeeeaaaallllly long. For a lot of reasons. Where do I start?

I’m going to start at the beginning of the day with the arrival of my in-laws half an hour early. Which I did anticipate them being a little early, just not half an hour. Okay, no problem, all I had to do was finish making my tea to take with for my chemo session—except my stress level is difficult to keep under control with them. They are the best-hearted people, and immediately insisted on being able to help once they knew I had to have chemo. I appreciate their willingness to drive me so much—I need someone to drive me. What I don’t need is my stress levels increasing, especially on a day when I was already a little stressed. I won’t go into the gritty details of the additional stress, suffice it to say I went from a slightly elevated stress level to through the roof. The reason my stress levels were elevated to begin with was that I didn’t know whether chemo would be a go today or not. Yesterday I went for my labs, but the test for the liver was done too late in the day to have the results same day and we wouldn’t know whether I’d even be able to have chemo until I arrived this morning.

We arrived early, and they took me back early, which ended up being a very good thing. Got the results. YAY!!! Chemotherapy was a go. I got myself settled, the pre-chemo cocktail all hooked in, and we were off. One the prep cocktail was done, we started the first chemo bag. I had brought movies, so was watching a movie and didn’t pay attention to when the bags were switched. But sometime between 10:30 and 10:45 I noticed labored breathing. I paused the movie and took a couple of deep breaths to see whether it would ease like it had the time before. My heart raced and it felt like something was pressing against my chest—hard. Not quite the elephant on the chest thing of a heart attack, but heavier than a two-year-old.

I knew this wasn’t right and it was getting worse quickly, so I told the chemo nurse I was having trouble breathing. She immediately turned off the drip and went for the doctor. They gave me a shot of something (not Benadryl—because I’m allergic to it) and the heaviness of the chest decreased, and after a few minutes the heart rate lessened. Apparently I was very flushed as well—even when I felt much more normal.

The decision was made to continue, but to give me chemo bag number 2 first, and then after I had gone through that one, we’d try chemo bag number 1 at a slower pace because I had handled it okay during Cycle 1. Normally Day 1 chemo of the cycle should last approximately 6 hours. We started this morning somewhere around 9:15 and it was after 6 PM by the time I was done. And THAT is a long time to be sitting in a chair with chemicals dripping into you.

The picture at the top of the post is because I feel as if I had a Christmas Angel sitting on my shoulder today. We were too close to making a hospital visit, and I am blessed to have a chemo nurse who reacted quickly and got things turned around as fast as she did. This also means I can count on the remainder of my Day 1 cycles being longer than the expected 6 hours. Hopefully not in the neighborhood of 9 hours, like today, but we will always need to start chemo bag 1 slowly and gradually increase to mitigate potential for the allergic reaction. Post chemo I have a blistering headache as a gift from the allergic reaction, I’m retaining water like a camel to the point where I can feel the swelling, and I have the after day 1 slight case of nausea. Tylenol has been taken for the headache, anti-nausea medication has been taken (and by the end of this post I’m feeling much better), and I have taken a sleeping pill to help counteract one of the prep cocktail drugs which causes me to not sleep well. I will have some tea and shortly (with any luck) sleep.

Oh, and the reason I need a driver? One of the drugs can cause confusion, as evidenced tonight when I reached into the back of the car we’ve had for 8 years and scrabbled around trying to find the door handle so I could put my things in the back seat. We only have two-door cars.

We’ll see what tomorrow brings.

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Nov. 16.

Day of Rest

My Status: Rested
Mood: Good

Sleep has been accomplished. And not only the drugged variety, which was interrupted by several trips during the night to excrete the extra fluids I’ve been carrying around, but this afternoon I had a honest-to-goodness, natural sleep, nap. Too much information? As I mentioned in my first post: My aim is to share my experiences with you, good, bad, horrid, and laughable.

Why would I share so much? For a few reasons:

  • Because it helps me to get it out. And this is the number one reason.
  • This is a journey and while it may be primarily MY journey, I am not on it alone.
  • Cancer used to be a word which was whispered from one person to the next, something to fear. It is far too common and affects too many people for us to continue whispering the word, but we still treat the symptoms, treatments, and journey with the same fear. Maybe by talking about all the issues we can move to a realm where we can freely discuss what is happening without that sense of awe and fear.
    • And this cycles back up to the first and second points for me. If I don’t feel free to discuss the gritty details, then I am isolated in my journey. I feel cut off from my support network, and brings everyone else along on a false journey.
  • As my dad used to say, “Life isn’t all peaches and cream.
  • By talking about that which causes fear, lessens the fear and gives us back a measure of control (however illusive)
  • And because I’m not much one for orthodox conventions. Sue me.

A common misconception is that the patient is travelling down the road toward health on their own. This couldn’t be further from the truth. This diagnosis, this journey, impacts not only me, but anyone who cares about me. We all bring our own backgrounds to the particular issue—in this case, Leukemia/Lymphoma + bad guy abnormalities = chemotherapy. While I am the one who is getting bruised, and has had the drips going into me, I am not the only one dealing with the diagnosis. Denny, although he will not admit it to me, is struggling with the diagnosis, and the reality of what I’m going through. Things have not been bad so far, which is fantastic, but he’s worried about what might lie ahead.

Everyone wants to do something to help. It is a natural, communal instinct. When you hear someone has trouble, you want to reach out and help those in need. The problem is that right now, there’s not a whole lot anyone can do for me. Except be there; sending prayers, good thoughts, good vibes, jokes, commiseration, reading these posts, commenting, etc. (Please don’t stop.)

Right now the posts have been primarily focused on those gritty details, but I’m sure I’ll break into other types of posts along the way … I’m a writer, and what affects me affects my characters, so I’m sure there will be a post or two about that in the not too distant future. I haven’t accomplished a lot of writing this week, but I’m okay with that as well. I know when I need it to be my focus, it will be there for me, taking me away from some of the reality.

Triumph of the day: Due to the aforementioned interruptions to sleep last night, I have lost 6 lbs of the water weight which had piled on due to the steroids. YAY!!! for accomplishments. I am still carrying excess water (which is immediately evident when I remove my compression glove—the line hangs around for a few hours), but that the water is making an effort to leave cheers me up. I thought I might be headed into nauseous country this morning, but thanks to my friend Mindy, I took her advice and took the nausea medication BEFORE there was an issue, and ultimately have remained nausea free for the remainder of the day. BOO-YA for the little things. I did have the after-white-cell-boosting fever, but it has now dissipated along with the headache it brought along for the ride. Fortunately, it didn’t exceed the mark where I needed to call anyone about it, so rest, fluids, and eating slowly has prevailed to make this day a good one. My head is still not up to writing, but that’s okay… there is always tomorrow, and with what I hope is another good night sleep, the words will start to flow.

The picture at the top of this post symbolizes how I feel about finally getting sleep. Rainbows have always been very special to me … because they’re rainbows and all colorful and sparkly. An awesome refraction of light. They are the promise of good things ahead.

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Nov. 15.

On the Quest for Oblivion

My Status: Tired
Mood: Relaxed

Not to sound like a broken record, but I’m tired today. I rested better last night than the night before, but sleep was still elusive. Fortunately, the issue with the prescription has been resolved, and shortly I will be floating in the fairy clouds pictured above enjoying a wonderful sleep.

Today marked my return to work—virtually. I have reconfigured my desk space in my office so I can work from home to minimize the possibility of infection, especially during the cold and flu season. There are a lot of reasons I feel that continuing to work as much as I can will be a good thing. First off, and most importantly, it will help me mentally to keep my spirits up. Things have changed, but I’m still able to do my job, so I can’t be THAT sick, right? I won’t bore everyone with all the other reasons … suffice it to say, there are reasons working right now is a positive thing. It does take a chunk out of my day, though. 😉

How are things going otherwise? Pretty well, I think. My right hand and forearm still hurt, and I’m still retaining water, but I’m hoping those things will dissipate now that I am not taking the steroid for a while. And I’m going to get this whole lack of sleep thing handled, so tomorrow should be good. I had one little issue though… yesterday they forgot to give me an injection to help boost my white cell counts. So I ran over during lunch and got the injection. And the injection has common side effects of making your bones ache, and you potentially run a fever, oh, and be alert for a severe allergic reaction… like if you can’t breathe, or pain that means your spleen is about to rupture but other than that, you’ll be fine. Apparently they took it seriously when I walked in and said, Okay, I’m here so you can torture me some more.. But *crosses fingers* so far, so good.

I don’t really have any more than that for tonight (and yes, I heard that collective sigh of relief) because I have things I want to talk about, but my brain is mush from being sleep-deprived, so we could travel into the realm of the ridiculous if I allowed my brain to lead the way here.

A big shout out to my sister, Dana for her birthday. I remember this day those years ago like it was yesterday. I knew someone special would be arriving, and I was right. Hope you had a great day.

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Nov. 14.

Chemo Cycle 1, Day 3 – Hydration

My Status: Tired
Mood: Meh Meh

I’m just going to jump in and say, I didn’t sleep well last night. Not because of any other unpleasant side effects (because I really haven’t had many), but I just couldn’t sleep. So I was tired today. I am STILL tired, and yet, not sure I will be able to sleep tonight. Also my right arm hurts because I had to have the chemo in the back of the hand, and I am retaining water like I’m a camel. Pretty soon I’ll have a visible hump. And the sleeplessness and water retention are both due to the steroid given during the chemo to make sure I don’t have an adverse reaction.

Yippy, Skippy—the thing to stop me from having a reaction is causing the issues. Lucky me. And I mean that in the most sarcastic and joking way. I know the steroid stopped me from having a respiratory reaction to the chemo, because on day 1, I did have a slight tightening in the chest at one point—enough to make me think about alerting the doctor, but then the wheeze loosened, and there was no need. The drugs were doing what they were supposed to.

So the side effects of sleeplessness and water retention we can deal with. The only reason I’m a bit miffed at the moment is that I mentioned the need for a sleep aid when I came in, and the doctor had to leave early, so the other doctor wound up writing the prescription … and forgot to DATE it. The pharmacy cannot fill a prescription with no date and will have to contact the doctor—who left early because of a meeting, and will not be available. I’m exhausted, but the night ahead could be a long one. When I crawl into bed, I’m going to pretend I’m floating in the boat in the picture above, on a nice sunny day—the perfect temperature, with a slight breeze as the water gently laps against the boat and rocks me to sleep. With luck (too bad I don’t have a slug of rum) I’ll sleep.

The bruise on my left arm, which now by the way looks as if someone has put an eggplant cutting on my arm, it’s so nice and purply-black. doesn’t hurt one whit. On my right arm, where there is minimal bruising, I hurt. It hurts to extend my fingers to pick things up and reaching down to pick things up from the floor—forget it. Pain shoots up my arm. I’m sure the pain is linked to the water retention. I have gained two pounds each day and have eaten less, so the doc wants me to flush my system with plain water because I am sensitive to the sodium in the drugs they’re giving me. Tonight, that plain water has been mixed with tea and milk to help me relax and hopefully sleep. 🙂

Speaking of bruises, during the night I rolled over and my left hand simply flopped on my right arm and sent sharp radiating pain throughout my arm … sure enough, this morning I see the beginning of a bruise. My hand barely touched the arm. I just hit it at the wrong point.

Small veins caused me to be there longer than the expected 3 hour appointment again tonight. Probably half an hour later than anticipated. But that I don’t really mind so far. Now I should stop complaining and tell everyone what went right today. My mom misread the treatment schedule and thought the appointment was for noon instead of 2 PM. This meant she was early to pick me up instead of late. YAY for small favors, and knocking one worry out of the way. And hubs was able to track down some arnica to put on my bruise. He had to go to multiple places, but persevered until he found some, so he gets the gold star for the day.

 

GoldStar

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