Tag Archives: Liana Gardner

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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Feb. 21.

Beware of the Sypot

First off a warning to the reader: this post is likely to be riddled with sypot of all kinds — misspelled words, missing words, or maybe a sentence or two that makes absolutely no sense. I am making no apology for how you find this post, it is as I am writing it and will probably not go back when I can see much more clearly than I can now to changfe things. Some of you may think, Aren’t you a writer? Shouldn’t you correctr everyting yoj have in writing? My answer = No. And here’s why.

When I started this blog, I promised to be as real as I could with it in sharing my journey along way. One of the things I have talked about the most is the fatigue that comes with not only the cancer itself, but with the cure. And right now I’m in the Bermuda Triangle of Fatigue coupled with the Catch-22 of not sleeping well. FATIGUE is the most common problem cancer fighters face, no matter hwat your version of the illness, there is this big dude named Fatigue waiting in a dark corner to club you with his baseball bat and knock you to your knees.

As a person with leukemia, the question I hear all the time from everyone around is is How are you feeling? or the statement I hope you are well. Please don’t miunserstand the following … I love that I have so MANY people in my life that CARE enough about me to ask how I am. I honestly do. BUT, it is also the question I have no happy answer for. Right now, there is not a circumstance wihen that question will have an ansswer of Great!! and I know the asker is not expecting that. If I say I’m fine … I’m lying. I am not fine. I have leyukemia and lymphoma and I am taking chemo to help get them back under control and I am now going for an infusion to boost the immune system which should win the academy award for best portrayal of playing dead. When I say I’m okay, take that as the best possible answer I can provide at the moment without lying to anyone. But most of the time, if I’m not lying … and I don’t like to do that to questions genuinely asked, the true and honest answer is going to be, I’m tired. Or I will simply avoid answering the question.

There are only so many times you can say, I’m tired or I’m fatigued or This day is kicking my butt before you feel like a Grade A, Number 1, First Class WHINER. I try to keep things positive most of the time, because I NEED TO. It’s not because I want to come off as little Mary Sunshine adorning everyone’s days with rays of light and rainbows, though I do try to spread happiness and love as I can. But I need to harness the power of the positive to help me defeat this beast trying to take me down. So when pretty much every day I am asekd to answer a question where there is a negative response waitingm, it does tkae me down a notch.

Normally, I don’t care what other people thingk about me. Primarily because it is their perception and feeling and the only thing I can do to sway them one way or the other is to continue being me. But in this case, when the words tired and fatigue are used so frequently, you begin to wonder whether people’s perception of you is changing through no fault of your own. DO THEY consider you a whiner for always being tired? But then I started to wonder whether a better understanding of what is meant by fatigue would help create common understanding for those who have not experienced this level of fatigue. So today, in this post, I’m NOT TELLING you I’m tired, I’m SHOWING you HOW tired I am. I have a form of dyslexia that is much harder to control when I am tired. Most of the time, when “Normal“, when letters arrange themselves in my brain in the wrong order by the time the command hits the fintgers typing the characters, the rearrangement of the owrd has taken place or I immediatelly catch on typeing and correct. Not this time. My brain is somewhat scrambled and the orders it thinks it is goving are not recived correctly by the fingers and mistakes are made. Frequently.

Big deal, right? Wrong. Those who know my nearly obsessive attention to detail when it comes to writing can confirm how much errors normally upsets me. Me On Fatigue = Scrambled Brain (breakfast anyone?) Thius manifests iteslf not only in writing but in speech as well. My entire language center can go on the fritz and sometimes it is really bad. Tonight, as I arrived home from my infusion (actually dropping off a prescription at the pharmacy, but I’ll get to that in a moment) I stard blankly into the car as I tried to remember what I had done with the credit card after the pharmacy clerk had returned it. Then I became confused becauyse I couldn’t remember giving it to her. Then FINALLY realization dawned: I hadn’t given her the credit card becayse the ONLY thinkg I was doing was DROPPING OFF the prescription. Now imagine that about every activity you do throughoyut your day. This truly illustrated a moment of the brain on fatigue. I was getting ready to tear the car aaprt when I remembered about only dropping it off. I DID however search for the excuse note I had drafted for the jury duty summons I have received, as I will not be able to appear. I rmemebered to ask about it (YAY!!! foir me) I remembered to remind the chemo nurse that I needed it. I helped her write it. And then I’m pretty sure I left it on the counter after having input my next appointments into my phone. Brain on Fatigue Fatigue means I can’t think straigh, I can’t write straight, I can’t speak straight, my emotions are a jumble and are raw and right next to the surface. It is easy to make me cry, and easier to piss me off. The good news is that, as always, it is easy to make me smile and laugh as well. More things are funny and more things are terrible. The brakes have come off, all filters have been dissolved, and life feels very much like something you’ll never have control over, even as an illusion, again.

So … after all that? How am I? I’m Tired. I’m Exhausted. I’m Fatigued/. And I very much open that you’ll not think less of me for feeling this way. It is honestly where I am. And hoepfully as well, you can understand how being reminded of such becomes a negative. Because the other thing I am (as in How am I) is De3aling. I am dealing with the cancer, dealing with the cures, dealing with the ftigyue, dealing with the isolation, dealing with my workload, dealing with not sleeping, or sleeping too much, dealing with getting ill and nto haveing anything to fight with … all of it in the ONLY way I know how.

One. Step. At. A. Time.

The picture at the top of the post is one I selected to show the tenacity of my hope; the tenacity of my faith. Tomorrow the sun is going to rise, and tomorrow, I am going to be here to see ti. Mabye not as it rises, but I will know on waking each day (presuming I have actually sletp) anothe r day has dawned. And the picture of the lantern is something in the chemo room the nurses clubbed together to buy as a decoration for the room for the patients. To remind us that through Love and Caring, Faith Makes All Things Possible.

***Note – In the body of this post when I typed what I had intended to be the word typos and it came out sypot, I laughed and couldn’t help but use it for the Subject of this post. So yes, the post Title misspelling was deliberate. Everyuthing else you have suffered through in this post comes from the very addled brain of yours truly./

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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. 30.

And So It Begins … Again

When I saw the oncologist last week we didn’t have the results from the CT Scan. I saw my regular physician this week and he had the results. And I’ll be candid … they aren’t good. The scan revealed what I already knew — that the nodule on my neck was not the only lymphoma mass that would be found. In fact, by the time I went to the doctor this week, a few more had made their presence known. I have a smattering in the neck area, one in the chest, and several in the abdomen. My doctor, who is a cautious physician, wants me to discuss prognosis with the oncologist. And being me, I asked what value it would have to know a number that is going to be inaccurate anyway?

My first acts to accomplish in 2017 is to get my affairs in order. Not because I believe I’m dying or that I won’t recover, but because it needs to be done and has been on my mind for some time and it is time to stop procrastinating. EVERYONE should have their affairs in order. You never know when that bus is going to run you over. Plain and simple. No one is guaranteed any specific time on this Earth. And now that I’ve said that, I have NO intention of going anywhere anytime soon. I have too much to accomplish with my life and I intend to do it.

My doctor was a little down with my results. My lab results are bad. My scan results are bad. But I was ready to dance a jig because the scan results had one result that made me very, very happy. I have been having near constant pain under my left rib cage for a few weeks, and eating certain foods made it extremely painful, which I have been finding out by trial and error. When with the oncologist, we discussed and we both felt it might be an enlargement of the spleen. Which is something you DON’T want. The scan results showed that my spleen was perfectly normal and the area where the pain is coming from is where there are some lymphoma lumps taking up space. We’re getting ready to blast those with chemo, so they will be going bye-bye, and I’ll just have small, soft meals in the meantime. But there was one little problem. I didn’t have the chemo meds yet and didn’t know when they would arrive. My doc got the oncologists office on the line and asked them to find out what was going on as he wanted me on the chemo immediately. There had been a slight mix-up and the meds had not been ordered, but they got it straightened out same day, and I received the shipment yesterday.

The chemo comes from a specialty pharmacy and so far I am incredibly impressed. They provide a mechanism to help you remember whether you have taken your medication or not as well as timer to put on the bottle cap that will alert you that it is time to take your next dose. And for me, this is fabulous. I don’t do pill dispensers well (it is such a hassle to fill them for me), so the little thing to flip it to show that you’ve taken it IS something I can do. Especially as it sticks directly on the bottle itself. And the timer??? Brilliant. Especially when I lose track of time so easily. Then after they arrived, the pharmacist called and went over how I am to take the medication, what to do, what not to do, and to let me know that they had trained staff available via phone 24/7 if I had any questions or couldn’t reach my doctor.

I will shortly be taking my second dose. So far, so good. A brief period of wooziness, but other than that feeling the same. The biggest thing for me to figure out was when to schedule the dose because I have to take on an empty stomach, so nothing 2 hours prior and 1 hour after (except water), and it has to be taken at the same time every day (hence the handy dandy timer). When I saw that it may cause dizziness, I decided to wait until after I had seen the knee doctor yesterday (yes, I managed to get some fluid on my knee that was giving me some trouble), so I felt after dinner would be good. That way, if I’m not feeling well, I can simply go to bed.

The picture at the top of the post fits the mood right now so perfectly. Yes, there is darkness, but the light is shining through. I am filled with hope and am so encouraged to be taking action to beat this cancer back down into submission. I am blessed in my friends and the number of people who care about me, I will never be able to say Thank You enough.

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