Tag Archives: tired

Feb. 21.

Beware of the Sypot

By Liana Gardner | Posted in Musings |
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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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Oct. 12.

Searching for the Rainbow

By Liana Gardner | Posted in Meh, Musings |
Comments (3)
Lightning and Rainbow

Lightning and Rainbow

Yesterday I had my three month check up with the oncologist. I don’t mind admitting that the past three months have been difficult ones for me as I do NOT wait well. The BIG question for the visit was whether the blood values had started behaving themselves or whether they either maintained or became worse, which means the watchful waiting would change from watching to chemo. Based on the way I have been feeling and my increased fatigue levels, I knew the results would be worse, and my anticipation was that we would discuss when to do the bone marrow biopsy and when to start chemo again. For the first time, I have approached the blood-value checking without knowing what I hoped for.

Let me explain. Barring divine intervention, I knew I would not be walking in to find that my values had all returned to the normal range. With the way I have been feeling, even had God made that happen, I’d have probably dissolved into a puddle of tears because the truth is I don’t feel well — I’m not 100% and I know it. And if everything was normal then there was something seriously wrong. So what were the possible outcomes of the visit? The expected march forward toward chemo, which is not something to be greeted with glee … or to my mind, even worse, sentenced to waiting another three months because the values remained steady.

Soooo, the results were worse, and not just a little worse. The progression continues to be aggressive and the values jumped as much as they did between April and July. What did I feel on hearing the results? Validated. My energy levels have been extremely low and at least there is a cause I can point to … other than feeling like a slug. But here is where things went off course from expectation. Instead of hearing bone marrow biopsy and chemo, I heard come back in January. Ummm, my blood levels are as bad or worse than they were when I went through chemo in 2013, so I didn’t understand why we would continue to wait.

But here’s the thing, while my white blood cells and lymphocytes are clogging up my system, my platelets are fighting the good fight and refusing to be beaten back. They are still within normal range. And BECAUSE they are still hanging tough, the doctor wants to give them the opportunity to continue their fight … so we wait and check again in January. Did I see this as a positive? NO! Why not? Because my mind doesn’t deal well with feeling like I’m in limbo. I know I’m not well, so I want to move forward and FIX the problem. As unpleasant as moving forward can be sometimes, it is taking action, and I am GREAT at putting one foot in front of the other and powering through. No matter what.

My dear friend, Italia, helped me get back on track emotionally with a lesson in gratitude. I was seeing the storm and the lightning strike and feeling like things were just going to continue in limbo, and that I truly don’t want to spend the rest of my life like a hermit. I need time-based boundaries … because I can do ANYTHING for XXX amount of time, as long as I know. Doing things for ??? amount of time, I don’t do well. So I saw the storm and the lightning was the jolt that said, you don’t have any control here and you’re just going to have to wait. Italia tapped me on the shoulder and pointed at the rainbow — the positives in the situation like: not having to be in chemo through the holidays, giving the medication my doctor prescribed to help with the fatigue a chance to work so I felt better and more ready to face chemo, being able to continue working from home to help me stay as healthy as possible. She reminded me that God is in control and I was focused on my picture of what I wanted and not on the bigger picture He has for my life.

This is WHY we have friends. 😀 To help us look for the right things. Normally, I am always searching for the rainbow, the bright spot in the storm. But all I saw were the gathering clouds and the destruction caused by the lightning. Does seeing the rainbow make things easier? A little. I am still dragging tail and feel like some thief came in and stole all my spoons while I napped, but I have my little ball of hope back, and with that alone I can conquer the world.

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Mar. 20.

The Eyes Have it

By Liana Gardner | Posted in Musings |
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I can’t believe it’s Thursday all ready. Did someone put this week on fast forward? I swear I was going to post this on Monday … but life kinda has a way of happening and getting in the way of good intentions. First things first—my blood counts are doing well. The doc is super pleased with how stable my hemoglobin and platelet counts are, and the white counts have skyrocketed, which means the injection to boost them is working. They will fall over the course of the next three weeks, so I’ll keep you posted.

I have had a little bit of a setback this week, however, unrelated to the leukemia & lymphoma. Monday was the day for what I THOUGHT was supposed to be my last shot in the eye. I was more than a little discouraged to be told during my appointment that I would probably need to have a booster shot two or three times a year. I think I’m going to have my doctor refer me to someone else for a second opinion. The reason I went to the retinologist in the first place was that I have some splotches near the center of my vision and I can’t see through them. The shots are to treat the edema in my right eye, and have done nothing for the splotches, AND the edema has worsened through the treatments. I’m not saying I think the shots have made me worse. Perhaps things would have been much more severe had I not started the treatments when I did, but as things stand, I want someone else to take a look.

On top of my disappointment at learning I’d have to continue having more shots, my eye is a mess. This time the redness is visible and yesterday I had to go back to the doctor because the eye was matted and sore. They believe I’m having an allergic reaction to the iodine used to sterilize the eye. Next time they’ll wash the iodine out after the shot has been given. Seriously???? I have five treatments with no adverse effects, but shot number six and my eye decides to have an allergic reaction??? It is still sore, and has to be cleaned a few times a day, but putting drops in helps and I think it might be feeling a bit better overall.

My energy levels have been a bit better this week, but wouldn’t you know I’d have the eye thing… when your eyelid feels heavy it makes you feel tired, or at least it does me. I’ve been taking lunch time naps when possible, aided by my two furry companions, Phoenix and Elsa. The girls are always ready when it’s time to take a nap, and Elsa is my trusty nap barometer. Actually, at night when it’s time for me to go to bed, she’ll come get me, even if I don’t think it’s time for sleep. She’s very persistent. And she assesses the degree of napping need. If I just need a little power nap, she’ll curl beside me. When she’s serious about me getting some good down time, she’ll lie across my midsection, and when she crawls into my arms, and snuggles her head under my chin, it means there WILL be some serious nappage going on. 😀

Other than having the stupid eye thing going on, things have been pretty normal … as normal as things can be right now. Although I do have days, like today, where my energy seems to be taking a dip. So when that happens, I have to listen and try to get a little more rest.

The picture at the top in in homage to the eye. It looks something like that.

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Mar. 14.

Cycle 5, Day 3 – Hydration

By Liana Gardner | Posted in Good Day |
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Okay… this post is a day late, but I can sum up the reason in a single word ….

EXHAUSTION

By the time I got home yesterday and handled some things for the day job, I had nothing left in the tank. My entire system threatened to revolt if I attempted to get one more thing done, so I did what I should have and went to bed early. But as tired as I was, I still found plenty to be grateful for. The daily ups and downs of life are truly put into perspective when you sit in a room with people who all have the same goal—to keep on living. Yesterday, we were so full in the chemo room, one man had to start his chemo sitting in a regular chair, until one of the other chairs was freed up. And one patient was having chemo in another room because we were so full.

I sat in my chair, thankful exhaustion was the worst of my woes for the day. Others are not so lucky—discussions of hospice and whether continuing chemotherapy will help to prolong life enough or whether it is time to make the patient as comfortable as possible—my heart goes out to those patients and their families for the hard times ahead. And I keep thinking about the guy I sat next to yesterday. He had to use a walker and had a brace on his knee ON TOP of having chemo. I asked him whether he at least had fun banging up his knee. He had been playing basketball when he hurt himself, but if he hadn’t, he wouldn’t know that he has osteosarcoma. Hopefully because he hurt himself, they will have caught it early enough.

Young, fit, your whole life ahead of you, or so you think, until you take a tumble on the basketball court and find out your horizon may not stretch as far as you once thought. Those were the thoughts I saw behind his eyes, as he went through his first chemo session. It’s not what he expected, but it’s something he has to deal with.

We don’t know what tomorrow is going to bring, we don’t know whether the treatment is going to work the way we hope, we can only keep the faith and move forward knowing we’re doing what we can to help our bodies heal. And so for me, I am thankful for exhaustion because things could be worse. I am thankful for my support network. And I’m thankful for the experiences that help me see things from a different perspective.

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Mar. 12.

Cycle 5, Day 2 – Chemo

By Liana Gardner | Posted in Good Day |
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Despite having taken the sleeping pill as I do on chemo nights, I still didn’t fall asleep until after midnight. And I took the pill early. I was certainly tired enough to sleep … exhausted is more like it, my mind wouldn’t rest until I made a note about something that wouldn’t leave me alone. I might understand if the thing that wouldn’t leave me alone had ANYTHING to do with the chemo, or the edits I’m working on, or even the book I’m currently researching and plotting out. But the pesky bugger was about a blog post I might want to write, one of these days when I have a few spare minutes. Nothing urgent. And something I’m certainly NOT doing this week.

After I made the note, I finally drifted off only to be awakened a few hours later by Denny getting out of bed a few times after Phoenix had gone down and scratched at the door to get out. After he put her back in bed the third time, I got up. I know Phoenix—when she gets an idea stuck in her head, she is NOT going to let it rest until she accomplishes whatever mission she is on. When I followed her, she first went over by the dresser and then to the bedroom door, and I realized she was thirsty. When I go to bed early (to read or work from bed), I bring the girls water dish in and set it next to the dresser so they can get a drink if they need one. They need their liquids just as much as we do. And while we didn’t go to be early, she was thirsty. I filled up a glass with water and she slurped away, only to be joined by Elsa as soon as the water was turned on. It had been a warm day.

After we were up at the necessary time, I told Denny she had been thirsty because he slept through the wee hour drink fest. His response? But it wasn’t time for a drink. Like telling that to a dog is going to mean anything at all. Phoenix didn’t care about what time it was … she was thirsty and wanted a drink. End of story.

Another thing that concerned Denny is that I have been snoring during sleep since starting chemo, and he is concerned about what it means and is disturbed because he doesn’t sleep as well. This coming from the man who can wake the dead with his snores. Yes, I am snoring. I have allergic reactions to the chemo drugs, and though we are running the drip at a slower rate so I don’t stop breathing, that doesn’t mean I am free of any reaction whatsoever. It means that the reaction has been reduced to a level that is not life threatening. I am taking my allergy meds—daily, but my sinuses are perennially stuffed, and I snore. This will improve after the chemo stops and I can lose some of the weight I have gained from the chemo, and I’ll no longer be getting the monthly dose of something I’m highly allergic to. I did recommend he go to Walgreen’s and pick up some earplugs.

Sooooo… the actual chemo today. It was delayed. We arrived right on time, and along with the supervising doctor, so all was good … except the delivery of the chemo drugs had been delayed and they didn’t have my cocktail for the day. But it was expected within the hour, so I kicked back and tried to work on some edits. I did accomplish some, but it became clear to me, my level of exhaustion was hindering the process and I wouldn’t be able to focus on the job at hand without at least a power nap. About the time I had this figured out, the cocktail arrived and I was hooked up. I pushed back and took a trip to the land of nod. And like yesterday, didn’t sleep deeply, but at least rested in limbo land and was able to defuzz my brain enough to get some work done. By the time the chemo was finished, so was I. Absolute exhaustion had set in. I didn’t even want anything for lunch. The only thing I wanted to find was my pillow. An hour later, I was ready to start working again. I still have another hour or so of juice left, and then it’ll be (hopefully) time to get a GOOD night’s sleep.

Denny was able to spend the time waiting in the chemo room with me, and I was the only patient through the time I was there. Apparently the only other patients for chemo that day were injection patients. So it was quiet.

Today, I’m just rolling along like the wave in the picture. Wherever the tide takes me.

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Mar. 11.

Cycle 5, Day 1 – Chemo

By Liana Gardner | Posted in Good Day |
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This will probably be a short quickly dashed off post because I have taken my meds and it’s been a long day already. I was able to have chemo. (YAY!!!) My liver values had gone back down, so that was a good sign. And they are going to wait until Thursday and then give me the white count booster shot, so all is good there as well. Chemo itself went well today.

On the other hand, I was exhausted. For the first time in any chemo session, I rested for a bit. I was attempting to work on my secret editing project, but knew my brain wasn’t with me, so I kicked back and rested for about an hour… you know the land in between actual wakefulness, and deep sleep where you can hear everything going on around you, but can’t open your eyes??? Yeah, that’s where I was. And after I sat back up and had a little hummus, I was able to focus much more clearly on the task at hand.

We did have a moment this afternoon that caused my chemo nurse some concern—I started coughing. Anyone who knows me well, knows me coughing is not an extraordinary event, but with my white counts being so low, she was concerned I might be coming down with something and wanted to make sure that if it continued after I left, or if my throat became sore, that I would call… regardless of whether the time was midnight or even later. I had been so focused on what I was doing, I hadn’t been paying attention to my surroundings. After all the other patients had left, and Denny had come to pick me up, I let the chemo nurse know what was most likely the cause of my coughing spasm.

One patient I have met before, came into the chemo room with her son to wait for the doctor to be free because she’d had her labs done, but then needed to see the doctor. The son is a heavy smoker, to the point where his pores exude the smell of smoke. Add that together with me being highly allergic to cigarette smoke, and you have a reason for my coughing spasm. I didn’t think about it when I started wheezing. I advise the nurse I was wheezing, took out my inhaler, and took a puff, then continued on with the task at hand. It was only after the chemo nurse questioned me about the coughing that I took stock of my surroundings and realized what was going on.

Funnily enough, they were sitting on the opposite side of the room from me, but that indicates the strength of the reaction. Anyway, the coughing abated after they left, and I’m doing well. Except for now being extremely tired and in search of my pillow.

The picture at the top of the post I thought apt because the mill may be old, but it can still grind exceedingly fine. And I feel a bit like having been run through the mill. 😀 Until tomorrow, goodnight.

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Mar. 10.

Will She … Or Won’t She…

By Liana Gardner | Posted in Musings |
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Still trekking through forest, with the promise of a clearing ahead. Tomorrow begins chemo cycle 5—with a bit of luck.

Today I had my labs, and my white counts continue to drop … not excessively, but enough to make me under the doctor’s cut off point. No shot was given because they wanted to run the values by the doctor. Since I will receive the shot to boost my white counts on Thursday, the nurse thought it likely that the doctor would choose to wait. The values are not dropping fast enough to cause alarm, but they definitely need to be watched.

I have also slacked off on drinking the dandelion tea on a daily basis and it showed up in my liver function values. *crosses fingers* Hopefully the values will not have raised to the point where I cannot have chemo tomorrow. So if the liver values are too high, then I’ll be sent home after getting a shot to boost up my white count which is too low. Figures my body can’t decide which way it wants to be.

After giving me the CBC results, the nurse told me to get some rest. And I’ll try, but it doesn’t always work out the way I’d hoped. For one thing, the “spring forward” time change always messes with my ability to sleep. I try to adjust my sleep hours, but what usually happens is I end up staring at the ceiling and getting far less rest than I would have had we simply left time alone for a change.

Tomorrow will be an early day, so I’d best get back to my edits so I can at least try to get some sleep. Wish me luck on being able to move forward with chemo.

PS – the low white counts mean continued isolation. Can’t risk being exposed to the sniffles at this point.

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Mar. 03.

Fatigue Mystery Solved

By Liana Gardner | Posted in Musings |
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Last week I talked about how tired I’ve been … well, today I found out why. I’ve been feeling more sluggish than a tree sloth, and it turns out my white blood cell counts are down. I went for my lab work today, just as I do every Monday, and while I didn’t have to have a supplemental shot, I gather it was a close run thing. The nurse said the white count was borderline, while the platelets were good, and the hemoglobin is holding steady. This is the lowest the white cell counts have been since receiving the initial chemo leukemia diagnosis in July. Despite the fatigue, I’m viewing this as good news. It means the chemo is doing something, the bad white cells are being obliterated, which is the whole point of the exercise.

I feel a bit like the squirrel in the picture. I’ve made it to the end of the path, and I’m just too tired to go another inch. I should be bouncing off the end, diving into my future, and all I want to do is curl up and take a nap. Those who know me well, know slow down and take it easy are barely in my realm of understanding. I do take time to reflect, but it is always with a purpose in mind. I’ll just have to remind myself there is a purpose here too: to give my body the resources it needs to fight. I want to be working on my new book, and I am making some small steps forward, but right now rest is more important. And that is a very hard thing to get through my head.

And as a bonus to you, my posts are much shorter when I’m tired. 😉

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Feb. 28.

Fatigued

By Liana Gardner | Posted in Musings |
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Yawn! That pretty much sums up this week for me. I’ve been tired every single day. This should have been the week my energy came bouncing back, but instead of bouncing, it hit the floor and played dead. Every day has left me bleary-eyed by 5 PM, and that’s with taking a lunchtime nap during the work day.

I realized a few days ago that I had been so tired I forgot to have my dandelion tea, which is probably why I’m still retaining excess water. I don’t know if it’s the changing weather or just that the chemo is hitting me harder this month … but I do know, I don’t like feeling this tired. I want to crawl into the castle in the picture and sleep for about a month. And at the same time, I want to get things accomplished. Not once in my entire life have I ever accomplished more than dreams and ideas while sleeping. Which by the way, I don’t want to give up the dreams and ideas, they help fuel my writing.

Not to go on and on whining about my tiredness, I have had some bright spots to my week. Even late this afternoon as my energy level was plunging, I figured out a possible solution for something in the day job, so I’ll be ready to tackle it and see whether I can make it a reality on Monday. I’ve been doing some research for my newest story and found out some important information about my main character this week. And, of course, the brightest spot to the week was signing with Italia Gandolfo of Gandolfo Helin Literary Management.

Other than being plum tuckered, I’m doing well. My blood values remain good, and I’m feeling well—except for the fatigue. Yesterday and today have been marginally better energy-wise, but tonight I may just lean back and stare at the ceiling for a while (otherwise known as pre-plotting) 😀 .

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Feb. 19.

The Blahs Hit

By Liana Gardner | Posted in Meh |
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The photo for today involves fog because right now I’m feeling a bit foggy. Today I was focused on the day job and got a lot accomplished. The problem is that when I was done with the day, I suddenly realized I wasn’t feeling all that great. Nauseous, tired, and completely unmotivated to work on anything—even this post. HA!

But then I realized one beautiful thing … I’ve been going through chemo for 4 months now, and tonight I’m more nauseous than I’ve been the entire time … and it’s manageable. I was able to have something to eat (nothing fancy, a helping of mashed potatoes) and I have not become one with the great porcelain bowl. And I’m starting to feel a tad better. Not great, but not as lousy as I was before.

I saw my doctor yesterday and she mildly chastised me for not sharing all my symptoms with her. (Ironically, yesterday I felt great.) And I told her my journey was so relatively light, I don’t really think of the negative symptoms as negative. Yes, after every chemo session I go through a few days of turning into a gas factory … I take the anti-nausea medications she prescribed and keep it in check. Yes, every treatment cycle means I’ll retain water like a camel and it takes a couple weeks to get back to normal. Yes, the injection to boost my white count gives me a headache and backaches, sometimes more severe than others, but these are known side effects, and none of it is beyond my ability to deal with. Yes, I get tired after the treatments, but I’m encouraged by how much better my energy is getting in between treatments.

So the bottom line is, I don’t talk about feeling poorly because I really haven’t had a bad time of it. I know many others who have had a much rougher time, so I feel blessed. But since I am not feeling the swiftest tonight, I am not working on things (other than this post) will probably watch a movie or read a little and get some rest. Oh, and I absolutely attribute my ability to stay well to keeping myself isolated most of the time, and being diligent about wearing a surgical mask when having to go out in public at any time.

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Feb. 11.

Cycle 4, Day 1 – Chemo

By Liana Gardner | Posted in Good Day |
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My Status: A little fuzzy around the edges
Mood: Good

I feel like there should be a warning at the beginning of this post …

****WARNING**** Mind explosion in progress.

In a nation focused on the freezing weather, the nice market boost based on the words of new Fed chief, Yellin, and the controversy surrounding whether Blake Griffin actually smacked Justin Bieber in Starbucks, or (more seriously) the death of Shirley Temple Black, my update about how chemo went is small potatoes. But I’m going to give it anyway. 😉

Tuesday’s are my loooooong day, but at least I was able to start my day earlier than normal so we weren’t making our way home at six o’clock. There is just something psychologically daunting about having been sitting in a chair all day and to not be finished by five. Last time I found myself staring at the drip and timing the next one. Not really a healthy mental place to be when I could have been focusing on getting something done. Anyway, starting early helped tremendously because there was still daylight on the drive home. However, first thing sitting in the chair, I was antsy. Could not get comfortable and couldn’t sit still. My fault, entirely. Last night, for some silly reason I can’t even remember, I decided not to use my bed of nails, even though I knew my lower back was having problems. I paid the price for that decision today. Since I couldn’t concentrate on what I had intended to do, I started a movie and things settled down.

Today became a reminder for how truly blessed I am in my journey. I have people who care, people who are willing to drive me to and/or from the treatments, people who are praying for me and my recovery. And I’m blessed in some aspects with my particular diagnosis and resulting treatments because while there have been one or two bumps along the way, my journey so far has been relatively smooth (and I’d really like it to stay that way).

I was reminded about the differences in diagnosis when I learned this morning of a very good friend who went to the ER because of a cough and has been diagnosed with lung cancer. And a reminder from my chemo nurse when she shared that she had to take her father for a lung biopsy tomorrow—and her father is not listening to the doctors, but dismissing them as being over zealous in their testing. And the reminder of how my journey have been relatively good came from a patient who I’d had chemo with before … she arrived to find out she may not be able to have chemo today, but would definitely be checking into the hospital for the next 4-5 days because of some negative test results.

In some ways the reminder of the journey itself hit harder because I watched her face and saw the reaction to learning she had a serious issue going on that had to be dealt with in the immediate future. I remembered my reaction to being told to go home, chemo wasn’t happening that week. How much worse to be told you’d be going directly to the hospital next door? Fortunately, she was able to have chemo prior to going next door to the hospital, but it was definitely a blow to her.

At the end of the day it was me, the other patient, and the chemo nurse chatting. And the other patient said something that made me count another blessing—the worst part of her journey was the exhaustion and she wished she could have my energy. I’ve been tired, I have worked through exhaustion, but I have been fortunate enough to have more energy on a regular basis than most of the chemo patients I’ve come into contact with. Okay, for starters, I really don’t sit still well and never have, so she was seeing me at the end of a day where I’d been in the chair for eight hours already. But the truth is that I have not had many of the exhausted days where the act of opening your eyelids should be greeted with trumpets blaring and confetti falling. I am more tired than normal for me, and my ability to focus on things has been severely depleted (like starting this post thinking I need to make tea, reminded myself 3 times before I realized I had half a cup at my elbow ready to drink—okay, that may just be chemo muzziness settling in). But I also know things could be a LOT worse. I’m thankful they aren’t.

Now I need to grab my HOT tea (finally made a fresh mug) and see what I can get done before getting up and doing the chemo thing all over again. I loved the picture for this post because today I felt a little like a kitten in a pot … not really happy with being confined, but not able to run away either. Besides, the kitten is too stinkin’ cute not to post.

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Jan. 17.

The Aftermath

By Liana Gardner | Posted in Meh |
Comments (2)

My Status: Headache-y
Mood: Cranky

Today what my body has been through in the last week caught up with me. Tired, headache I can’t seem to get rid of, and I’m retaining water like a camel. So I took it slow and easy this morning. I had an appointment with the surgeon for the port recheck today at 11:30, so I geared my morning toward prepping for that. My only problem with the recheck was finding the doctor’s office.

Once again, I didn’t get a confirmation call… and if I had, things might have gone a lot smoother because I might have questioned them when they told me to go to an office I’d never heard of. Not even thinking twice about it, I hopped in the car and went to the office I know… to be told when I walked in the door that I was at the wrong location. The receptionist handed me a card with the address, a place MUCH closer to my house, and off I went. Good thing I was early for the appointment at the wrong place, eh? I arrived at the “new” location and couldn’t find the suite on the card, so popped into the Urgent Care facility on the ground floor and asked. The receptionist there looked at me like I had two heads. So I asked for the doctor… OHHHH despite having 101 as the suite number on the card, he was upstairs… they didn’t tell me what suite, but gave me lousy directions “just up the stairs”.

By this time, my temper was frayed. The headache I had been trying to outrun came on full force, and I was NOT a happy camper. This is one of those times where I know my anger was disproportionate to the situation, but I also couldn’t change things. (Don’t worry, I didn’t behead anyone… I just kept stating over and over that I was NOT happy.) Fortunately, everything is good with the port, and I don’t have to go back unless there is a problem with it. And the drive home was short after having driven half the county earlier.

Knowing I wasn’t fit for any interactions with people, when I got home, I took a nap, hoping the headache would go away. No such luck. Of course, I’m way behind on getting fluids into me because I haven’t figured out how to sleep and drink at the same time. Pushing the fluids will ultimately help the head situation. I did ice it, so the edge has been dimmed, but still suffering with it. I am now drinking tea, and will try a little food before nausea kicks in, but I do have to say today has not been one of my favorites. I really could have done without the extra driving and the headache can leave any time.

The picture shows how I feel… being beaten by the forces of nature at the moment.

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Dec. 21.

Life Beyond Normal

By Liana Gardner | Posted in Musings |
Comments (0)

ChristmasBells

My Status: Headache ascendant
Mood: Philosophical

I love the holiday season and all of the festive atmosphere, the twinkling lights, the songs, decorating, and most importantly cherishing time spent with family and friends—there is a magic for all to experience. I have even been known to thrive on the hustle and bustle of this time of year. Normally. But sometimes life throws a curve and you end up living it beyond normal.

Beyond normal can include things that are fabulous or things that are not so great. It is an extreme, and when it happens things are different—you have to learn to adjust or it can be a bumpy ride, whether on the up or down swing. Beyond normal is where I’m living right now, and it can be difficult to keep your footing out here. Things I wouldn’t have even thought about doing twice last year can wipe me out this year … and do.

This week has been a particularly tough one, with the allergic reaction on Tuesday during chemo and the aftermath as well as the length of time the chemo took because of the reaction. It has depleted the few resources I had built up, and left a dishrag doll in its place. This season that I love is passing me by, and I’m missing most of it. I want to embrace it, but cannot lift my arms high enough to do so. Normally, I’m a fighter, and would push myself, but here in beyond normal I simply can’t. So I’ll just have to make up for it next year. 😉

Beyond normal impacts everything in your life. Even the simple day-to-day tasks, or maybe most especially the day-to-day tasks. This morning, I had a plan for things I wanted to accomplish. A small list, one which had been modified (or so I thought) to the beyond normal standards. First off, it took me about an hour to convince myself to move. I’ve had a nasty headache since Thursday night, so that was something additional to battle. Nausea was trying to take hold this morning, so it had to be kicked down. And standing made me a little light-headed.

I persevered. I took the tasks slowly, one at a time, and kept moving forward—with breaks along the way. At one point, I passed the mirror and noticed my face was flushed. Which for me is actually fairly normal, although, usually there is more reason for it than what I had been doing. A little while later I passed the same mirror and one look told me I was done for the day. Instead of being flushed, I had paled a shade or three … in other words, it could have been Caspar staring back at me from the mirror, which is not a good sign. And I was shaking. Time to stop or pass out.

On top of the rest of it, because of the leukemia, throughout the day I will periodically sweat profusely, with no effort expended whatsoever. Such a pleasant thing. HA. I didn’t get everything I wanted to accomplished, but in beyond normal, I’ll accept what was done and won’t worry about what wasn’t—because I can’t. I’m doing the best I can, and my focus MUST be on getting well. And part of getting well is knowing when to stop (and no, I don’t yet have it mastered). All the focus must be on positive and not the negative.

In thinking about living life beyond normal, I know I am not the only one out here on the fringe this year (or any year). So when you see someone who is having to count to 3 before taking the next step, give them an extra smile to encourage them along their way, or a helping hand. It’s not easy out here, and we all end up here at one point or another.

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Dec. 18.

Cycle 2, Day 2 – Chemo

By Liana Gardner | Posted in Good Day |
Comments (4)
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

By Liana Gardner | Posted in Meh |
Comments (8)

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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Dec. 13.

Working Through Exhaustion

By Liana Gardner | Posted in Hallelujah |
Comments (2)

My Status: Sweating, but good
Mood: Jubilant

Today was one of those days where the simple act of crawling out of bed was a major triumph. (My apologies in advance for all the bleary-eyed typos that may creep into this post.) I don’t get it. Night before last I had a horrible night of sleep. I was restless, tossed and turned, woke up every half hour to hour, not a good night. You’d expect that I’d be tired, right? Wrong. Yesterday I had energy, got things done for the day job, got a couple things accomplished last night, and when I finally started to yawn, I went to bed. At a reasonable hour. I slept really well last night, but morning came and crawling really is the best description for how I was moving.

You know the feeling… the one where the Mac truck left tire tracks on your back as it drove on through. Not that I was achy, just overwhelmingly tired. If I would have had to drive to work, I don’t think I’d have made it, but when all I have to do is cross the landing, it took me approximately half an hour, but I convinced myself to make the trek.

Day job went the smoothest it has all week, which is not to say smooth, but the past two weeks have been ugly as far as things needing attention. I actually accomplished something new. Not as much as I wanted, but I’ll take accomplishment where I can get it. And the accomplishment is something I’ve been pushing for for several years, so to finally get it implemented was HUGE.

Tim LawrencePhoto: Alptraum

Tim Lawrence
Photo: Alptraum

But when the day job was done, I was drained. Completely wrung out. I was ready for bed at 6 o’clock, but knew better than to give into the urge, and didn’t want to take a nap for the same reason. If I went to bed at 6, I’d be up at 2 or 3 AM staring at the ceiling in the dark. And then my sleep pattern would get all messed up… and it is a delicate little beast, so I don’t like to mess it up more than I can help. There remained the question of what to do with myself for the evening. But then Tim (the guy in the picture is my vision of Katie’s best friend, Tim) showed up and flooded me with a scene. I had to write. I didn’t know whether I’d be putting gibberish on the page or not because I was so bleary-eyed and exhausted I wanted to face-plant on the desk. But I had to trust the instinct driving me.

I am soooooo glad I did. Tim kept talking, I plugged in some Christmas tunes, which were a little at odds with the scene we were going through, but it somehow worked. Funnily enough, the more I wrote, the less tired I became. A little over 1,500 words later, I stopped. The characters were still talking, but I needed to take a moment because one was trying to take the spotlight, and my gut said that was the wrong direction. And I wasn’t ready to work with the next character—who is frankly a pain and I knew I wouldn’t do him justice tonight. Maybe tomorrow.

Poor Tim is having such a rough time, and I’m so proud of him. He usually bottles up his feelings, but this time let me hear them loud and clear. When I realized we had completed a few necessary scenes (and even one unexpected one) I was ready to break into the Hallelujah chorus. This was the most I’ve been able to accomplish word-wise, story-wise since finding out I needed chemo. FINALLY!! I don’t have the words to say how good this feels. I was trying not to despair that I wasn’t writing… but it is probably the most difficult thing for me to battle. I’m missing part of me without the writing.

So tonight, I feel whole. And other than the CLL sweats when it’s 45 degrees, I feel pretty normal, too. And tired, but not the sheer exhaustion that plagued me all day. Good tired. Accomplished tired. Ready for sleep.

Good Night. May your dreams be sweet or if they’re not at least a good plot for a novel.

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Dec. 10.

False Start

By Liana Gardner | Posted in Meh |
Comments (0)
Christmas ball by fotoman228

Christmas ball by fotoman228

My Status: Tired and Congested
Mood: Disappointed

Yesterday was Chemo Eve, or so I thought. I went yesterday for my labs, the machine they use to assess the blood values was not working correctly, so they told me they’d call with the results. In the afternoon, I did receive a call from the doctor’s office—to confirm my chemo appointment. I mentioned that I had not yet heard my results and wanted to make sure everything was okay. The gal was on the phone and I was told someone would call. That call never came. And one presumes no news, is good news because they would have called if something wasn’t right … right?

I woke up early this morning, packed up all my stuff, and exited just as my driver pulled up. I was totally prepared. A bag of snacks and water, a thermos of tea, my blanket for if I get cold (and slippers because my feet do get cold), and my laptop along with some movies. A veritable pack-mule ready for her trek. We arrived timely and they took me back. I kicked back in my chair, changed into my slippers, had the first movie loaded and laptop all plugged in when the chemo nurse came back and told me they were sending me home.

Um, What??? Honestly, I thought she was joking because I had already set up all my stuff and was ready to roll. But apparently my liver enzymes were high. One of the chemo drugs I could have had, but the other—the one I have two days in a row—cannot be given when the liver levels are out of whack. So they sent me home to drink lots of fluids and we’ll try again next week.

Why are the liver enzymes high? My guess is the antiinflammatories I had to take to get the pain in my knee under control. And that I’ve had to take Tylenol for pain management. Not in doses which would normally elevate the liver functions, but since my body is definitely not handling things well these days, the liver decided it was going to whine along with the rest of the body.

By the time I got home, the day was half gone and I needed to rest. I’m not really sure how I’m supposed to drink more throughout the day… I already drink more than a gallon a day. Next thing you know my bladder will throw up picket lines and go on strike.

On one hand, I am disappointed we had to postpone the chemo until next week. I’m not a patient person, and I want to get on with things. But on the other hand, one thought that crossed my mind this morning as we were headed to my supposed chemo treatment—we’d had a lot of winds yesterday and I am congested and coughing, would that have made it more difficult to get through the chemo? Since the one drug is known for respiratory issues, my guess is yes. So maybe, just maybe, postponing things a week is a blessing in disguise.

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Dec. 09.

Chemo Eve

By Liana Gardner | Posted in Musings |
Comments (8)
Christmas by Lyanne85

Christmas by Lyanne85

My Status: Tired
Mood: Content

That’s right, it’s Chemo Eve. I will NOT be breaking out the champagne for this one. Somehow the thought of going tomorrow to sit in a chair for six hours while various drugs are dripped into my system just doesn’t fill me with the party attitude. But that’s okay. Not everything in life is a party, nor should it be. I appreciate the journey I’ve had so far with the chemo because overall the reactions have been light. Will they continue to be?

*shrugs* Tomorrow will tell.

Tomorrow is my 6 hour day, and I have my snacks ready, thermos waiting to be filled with tea, so I have something warm to drink throughout the day, slippers, movies to play on my laptop, a big red, fleece blanket, and a driver who will most likely be on time. I feel like I’m off to camp. Camp Chemo—the camp where everyone has their own drip bag, and the games are lame, but the grand prize for camp completion is the coveted remission.

So while I’m not necessarily looking forward to the next three days, by the end of the week I will have notched the second cycle of six on the chemo tree, and will be one-third of the way through my treatment … which sounds a heckuva lot better than 16% of the way there. It’s the equivalent of eating liver when I was a kid. I would never have requested that we have liver for dinner, it was not, and remains not one of my favorites, but when it was served, we had to eat it. I learned the trick early on of making sure I had a mountain of mashed potatoes to bury it with, and I’d take a heaping portion of the grilled onions, too. Every bite had to have mashed potato and onion with it, and ultimately I’d finish the liver first, and then enjoy my last few bites of mashed potatoes as my reward. So while chemo was definitely not on my list of things to start in 2013, better health and being well will be my reward for persevering.

While I did rest a lot over the weekend, today I was tired for most of the day. I blame the weather. We had nice sunshine, but winds caused my allergies to flare up and my sinuses to go haywire, so I’m not as rested feeling as I had hoped to be. And the leukemia has been kicking up, because even though the temps were at 46F, I was sweating while sitting still. I did manage to accomplish what I needed to for the day job today so that was a positive. I don’t like going off with things left undone to fester while waiting for me to return. And tonight, I’m a little less tired because I had a great conversation with a fellow writer, and that always energizes me.

Until tomorrow. Good night.

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Nov. 14.

Chemo Cycle 1, Day 3 – Hydration

By Liana Gardner | Posted in Meh |
Comments (8)

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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