Tag Archives: fatigue

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./

Tagged: , , , , , , , , , , , , , , ,

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. 🙂

Tagged: , , , , , , , , , , , , , , , , , ,

Oct. 12.

Searching for the Rainbow

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.

Tagged: , , , , , , , , , , ,

Aug. 15.

Update From the Hermit Hut

Old Wood House

Old Wood House

Normally, I talk about the picture at the bottom of my post, but as we head toward fall, I loved this particular image for a variety of reasons. The colors, the remoteness, and the feeling like you could hide away inside and nobody would ever find you. For most writers, that idea is bliss. A place where there is only you and the words on the page; a place to shut out the rest of the world for a period of time.

IMG_20160812_210640It has been a month since I posted about no longer being in remission. I have been reminded how blessed I am to have the friends and family I do. I am touched to know how much support I have — though in many ways this is a solitary journey, I do not take it alone. I am reminded of this on a daily basis. At last update, I was told to stay away from sick people, which can be difficult in an office environment. In fact, the Friday following my appointment, I received a timely reminder as to how difficult it really is. I was generally staying in my somewhat isolated workstation area, but went to the kitchen to make a cup of tea when one of the sales reps walked in to get some coffee. We started chatting and during the course of the conversation, she mentioned she had a cold. I would never have known had she not mentioned it. As it was, I backed up, apologized if I seemed rude and told her I couldn’t be around her.

IMG_20160812_210528Fortunately, I had already put the steps into motion to get a note from the doctor to allow me to work from home, and that is where I have been ever since — enjoying life as a hermit. The desk pics you see are my new desk/workstation I have finally put together. I had ordered the desk and it arrived on 8/1, but it wasn’t put together until 8/12. Today was a good day because I finally got a chance to use the standing workstation again. I am used to standing in the office and brought the stand and the monitors from work, along with my keyboard and mouse. In these past few weeks I have learned beyond a shadow of a doubt that I require a standing workstation for the sake of my back. With as much desk work as I do, I cannot sit for that many hours without paying a severe price with my back. The first week was okay, the second painful, and last week excruciating. But a good massage over the weekend and working standing up today and I am doing much, much better.

As for my health, I received a call from the oncologist office to tell me to make an appointment with my GP because my thyroid values were out of whack. I called the office and had them call in the prescription for me, one that I had been able to be off for over a year, and made the appointment. The day before my appointment, an eye infection cropped up, and I was glad it decided to show up before rather than after the appointment. I have also been battling a patch of fungal infection on my leg for the better part of the year, and while I get it to a point where it is not bothersome, it continues to come back, so I asked the doc for some more cream to treat it. The surprise was the spot on my finger was a pre-cancer. It cropped up that very day and we froze it off.

So nothing major, just small inconveniences that have to be dealt with right away so they don’t get out of control. Based on my conversation with the doc, it does seem more likely that I will be headed back to chemo in the next couple months. He received the full report from my oncologist and mentioned that she said she’d have to treat me again. They have not asked me to come back in sooner than October, so I would anticipate either late October or early November. Which is kind of what I anticipated anyway.

So … the worst issue so far has been my back, and tiring sooner than I would like. I take naps daily and my back is already TONS better than it was last week, so all in all I’m good.

Tagged: , , , , , , , , , , , ,

Mar. 03.

Fatigue Mystery Solved

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. 😉

Tagged: , , , , , , , , , , , , , , , ,

UA-19119025-1