Tag Archives: sleep

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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Mar. 20.

The Eyes Have it

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. πŸ˜€

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

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

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

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. πŸ˜€ Until tomorrow, goodnight.

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Mar. 10.

Will She … Or Won’t She…

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

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. πŸ˜‰

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Feb. 28.

Fatigued

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) πŸ˜€ .

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Feb. 19.

The Blahs Hit

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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Jan. 20.

Halfway to the Unknown

My Status: A little more tired than I’d like to admit
Mood: Good

Just a quick update… I saw my doctor today to review my blood work, as I do every Monday after chemo treatments, and had a chance to ask her how I was doing overall since we had hit the halfway mark. Are you ready for her response????

We don’t know.

She agreed that it was a good time to make an assessment of progress and was ready to send me for some tests—but then she looked at my chart. Here’s the problem … the tests she thought about running as a gauge to see how the chemo was working didn’t show the evil abnormalities the first time around, so re-running them wouldn’t give us any better idea about how I’m responding to the treatment than I know right now. The test which gave us the information about the abnormalities in the leukemia and the lymphoma was the bone marrow biopsy, and because of the potential for infection, the doctor will not conduct that test again until AFTER I have completed all six treatment cycles.

So it means we’ll have to wait until after my April treatment with probably a little bit of time for me to recover from the treatment itself, then have the biopsy done and wait a week or two for the results. In all likelihood, I won’t know how I’m doing against the cancer in me until the end of May.

Does my body really need to keep everything a secret??? I get the whole mysterious woman thing, but seriously, I’m not supposed to be mysterious to myself.

Other than the whole not really knowing how I’m doing overall against cancer, my blood values are good and the doc is quite pleased with how healthy I look, and how well I’ve been managing the treatments so far. So we’ll just keep moving forward one step at a time.

PS—I did ask the doc about using the port for taking blood, but she prefers not because not everyone knows how to handle the port, and it is more prone to infection than a normal stick for blood. *sigh* It took two tries to get me today… this is becoming a trend.

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Jan. 17.

The Aftermath

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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Jan. 15.

Cycle 3, Day 2 – Chemo

My Status: Rested
Mood: Good

Normally I talk about the picture for the post at the end, but I’m going to switch things up today and talk about this one now. πŸ™‚ This picture spoke to me because it is how I feel right now. My body has a few cracks, and I may be a bit mossy around the edges, but I’m rested and merging with what I need to make me whole. (Besides… I can totally do that hairstyle right now.) My journey so far through Leukemia and Lymphoma has had relatively few bumps and for that I am eternally grateful. Resting is what my body needs… and sometimes is the most difficult thing for me to do.

Today went very smooth. Arrived on time, the chemo nurse put a new needle in, hooked me up, and away we dripped. At a normal pace. She slowed it down during the middle because she didn’t want to give it to me too fast, and as a consequence I am much clearer-headed than yesterday. 3 hours and we were ready to leave. SUCCESS!!!! The only issue I had was starting to get antsy from sitting near the end. And after yesterday’s marathon, can you blame me?

HalsaMatAt night, I usually use my spike mat, aka my modern bed of nails, to help relax my back and work out some of the back issues I have, but last night I didn’t use it. Primarily because I was so foggy and had taken a sleeping pill, and didn’t want to stay on it for too long or I might have permadents in my back. But since I DIDN’T use it… my back was not happy with more hours in the chair. Those who know me well, know I swear by my spike mat. It has allowed me to keep my back from completely giving up on me and helps me get a much better night sleep. And the pillow is the best part. LOVE my pillow. Anyway, today after being antsy during chemo, I came home, got out the mat and took a nap—despite the drug in the pre-chemo cocktail designed to hype me up. THAT is the power of the spike mat. I feel refreshed, my brain isn’t hazy, and I’m ready to attack more edits. Huzzah!!!

Now I should probably think about something to eat… oh yeah, before my nap, the tum was rumbling a bit, but now is solid. More fluid flushing and a bit of something to eat in my future. πŸ˜‰ All for now. Looking forward to closing out this cycle tomorrow and I will be 50% of the way through my chemo sessions.

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Dec. 18.

Cycle 2, Day 2 – Chemo

Christmas Candles

Christmas Candles

My Status: Tired
Mood: Doing better

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

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

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

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

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

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Dec. 17.

Cycle 2, Day 1 Chemo

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

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

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

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

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

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

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

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

We’ll see what tomorrow brings.

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Dec. 13.

Working Through Exhaustion

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. 09.

Chemo Eve

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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Dec. 02.

What a Difference a Day Makes…

ChristmasBed

My Status: MUCH better
Mood: Ebullient

My title of the post today may be a bit clichΓ©, but it is the truth. Or maybe more appropriately, what a difference a good night sleep makes. Yesterday, by the time I had posted about the whole knee incident, I was feeling a bit better. Today when I awoke, my knee was a bit stiff… that’s it. Right now it feels like nothing ever happened. Okay, so my arms and back are still telling me that my right knee refused to cooperate and they had to pick up the slack, but other than that??? Not a sign in my knee that it has been anything other than right as rain. And my arms are better. They no longer shake when trying to lift them more than three inches and I can actually raise them above my head without more than a minor protest. They feel like I went to the gym and was over aggressive about working out. Which is close to the truth.

Yesterday morning, I wasn’t sure I’d be able to make the commute to work … across the upstairs landing to my office. And the thought of getting up and sitting down in my chair, and making the trek back to the bedroom overwhelmed me. But I put in a full day’s work, made it up and down the stairs several times, and drove myself to the doctor’s office and had my labs done—all without one ounce of pain and I didn’t even wear the knee stabilizer.

The fateful meeting between Doogie and me took place today. Since I had called in and spoken to him, he had to see me when I was in to have my blood drawn. Yes, he still has all of his own teeth—I restrained myself from kicking them down his throat. Probably because I felt so good. Sunday might have been touch and go, especially before the drugs finally kicked in. I did manage to make the points that all I needed were some drugs that were stronger than Tylenol. He was thorough enough to pull up the records from my trip to the ER, and since they had forgotten to post the Doppler results, he had them sent right over as well. His conclusion was about the same as the ER doc—no one has a clue about why the knee responded in the way that it did. Doogie does agree that calling the oncologist vs. my regular doc was the best course of action. Now comes the big question … do I still have to go to my regular doc since I saw a doc today? Ask my doc and he’ll tell you yes, I do need to see him. But he’ll agree the strangeness surrounding the knee issue would be more indicative of a possible chemo reaction. Let’s hope it doesn’t happen again.

Anyway, if you can’t tell, I’m just so happy to be out of the pain that I was in … and that’s all that matters today. Well, that and as I posted on Facebook, I may have just had my first Christmas miracle of 2013. Denny decided to make himself dinner tonight, and it did not require reheating of something purchased from a fast food establishment, or simply heating up in the microwave. He was ambitious and actually made his very own salmon burger. He did ask me how, brought me the package and I told him only to make up one patty and to use olive oil in our cute little fry pan (and to use the lid from the pot so it didn’t splatter all over). He was quite proud of how he put everything together and told me it was quite delicious. And when I checked the kitchen later … it was STILL STANDING. No scorches, and the stove top was in decent shape. A TREMENDOUS milestone has been crossed.

The picture at the top of this post has special significance. Yesterday as we were both crashing—Denny from exhaustion, me from drugs and actively seeking oblivion—Denny said, I guess we won’t be changing the bed today. Sunday is the day I like to wash and change the bedding, a process he thinks is far too frequent, by the way. I think he said monthly is sufficient. I disagree—we do it my way. But to be honest, another day that comment might have irritated me, but the thought of having to move enough to even strip the bed wore me out, so as much as I love clean sheets, they’d be fine for another day (and at that point I was thinking or seven). By the time he made it home from work, I had stripped the bed, washed the blanket and the sheets were in the dryer, and the fitted sheets were in place. So he helped me with the blanket and Christmas comforter. I may not get much decorating done this year. I’ll live. But at least the bed has been decorated and was my triumph over the latest bump in the road.

PS Elsa couldn’t figure out why I was taking a picture of the bed … she was just happy the flash wasn’t going off in her eyes.

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Dec. 01.

Just Pain, Not Gain

My Status: In pain
Mood: Coming out of the dark

This post is a completely different one that I had planned for yesterday—a post I didn’t get to because of pain. Yesterday’s post would have been about depression and the month of November … I may yet write that one, so won’t say any more now. Why didn’t I post it? Simple. Yesterday when I woke up, my right knee hurt.

Gryphon

Gryphon

Knee pain on waking used to be a lot more frequent when my dog Gryphon was still alive. Gryphon would get hot, and would move down to the end of the bed, and curl up next to me. She always had to be touching someone during sleep, so she’d roll against my lower legs and put enough pressure on them to throw my back out of whack. So I am very experienced on what knee pain feels like when the alignment of my spine is out. This wasn’t it. No dog had slept down by my feet, both Phoenix and Elsa prefer to be up by our heads. And I knew where both girls were night before last because Denny has been on the graveyard shift, so Phoenix curls up with her butt next to my pit, and Elsa tries to mold herself to my side right under that—with her butt next to Phoenix’s so she can kick her in the middle of the night.

So on waking, when I had no back pain, only knee pain, I wondered what the heck was going on. But since the pain was around level 3 of the 10-point pain scale, I figured that as I was up and moving around, it’d get better. It didn’t. I tried heat, I tried ice, I tried elevating it, I tried arnica, I tried the bed massaging vibrations, I tried using my spike matt, and when none of these tried-and-true methods helped to alleviate the pain, and the pain kept increasing, I took some Tylenol. And before anyone tells me I should have taken ibuprofen or Aleve, I can’t due to my propensity for gastritis—and that’s a sleeping monster I don’t want to wake at the moment.

The pain kept increasing to the point where it had risen from a 3 to an 8 on the 10-point scale. 10 being shoot me now, 9 being crying profusely, 8 is whimpering and moaning—I can’t take much more. Couple this with the fact that I normally have a high pain tolerance, and I was running a low-grade fever, I figured it was time to place a call to the doctor—I needed buffer pain meds… but which one should I call?

I chose to call the oncologist because I wanted to rule out any connection/reaction to the chemo, etc. As I was going through the number selections to appropriately direct my call, I found out the doctor on call that day was Doogie. Crap!! I hung up, but the answering service called me back. I gave Doogie the summary of what had been going on, that the leg did not seem overly swollen (maybe a smidge, but nothing more), that I was running a low-grade fever, and that Tylenol was doing nothing to resolve the issue, and the pain kept getting worse. His response? Give the Tylenol more time to work, keep taking it every 6-8 hours, and he’d be in the office on Monday when I had to go back for labs and he’d take a look at it then if it were still a problem.

I should have called my regular doc. He’d have understood that when I said my pain level was an 8 and it kept increasing, all I was looking for was for something to help reduce the pain level—then I would care what it was and why it hurt, but until the pain was under control, I didn’t really give a rip. By this point, I couldn’t walk without hanging on to something and walk is throwing roses at what I was doing. You couldn’t even call it a hobble. Getting in and out of bed was an excruciating process, and trips up and down the stairs were close to torture (and therefore kept to the absolute minimum). The stairs I managed by using the rail and my arms took the brunt of my weight. Mind you, I could stand still without pain, but any flexing of the knee, and later even the ankle caused pain to invade every part of me.

So this morning, as soon as Denny got home, entailed a trip to the emergency room. I had not slept due to the pain and there was no way I could contemplate it continuing to get worse until Monday, when Doogie said he’d look at it. We got there early and were back in the exam room within 10 minutes, perhaps an ER first for expediency. Then the speed broke down. More than 4 hours later, we finally left with a completely inconsequential diagnosis of maybe the pain stemming from an arthritic condition in the knee. When I first was taken back, they gave me some dilaudid and some anti-nausea meds because I always get sick with dilaudid. Then I saw the doc, they ran a bunch of tests—x-rays, blood tests, ultra sound, etc. During this phase, it was great, the pain meds had kicked in and I felt good. But because I had to stay in the horrid hospital bed for the amount of time I did, by the time I left, I was actually worse than when I had arrived. My neck and arm muscles were exceptionally sore, I had a knee stabilizer put on which meant I couldn’t bend the knee, which was not working with the wheelchair because there was no support for the fully extended leg.

Poor Denny was so tired by this point, he was reaching shut down mode, but I couldn’t drive… my pain level ALL OVER was now at about 8.5. We had a (very) slight fender bender exiting the freeway because people were rolling through the light to turn right, Denny looked away to check for oncoming traffic and the girl in front of him had abruptly stopped instead of rolling through. We weren’t even going 10 mph, but her take on the situation rivaled the end of the world. We finally got to the pharmacy, and Denny played the hero by taking my pain med prescription in and waiting for it to be ready—even with as tired as he was.

As soon as we reached home, we had a bite to eat and then crashed (me with pain meds, Denny from exhaustion). And as I suspected, the pain meds did their job. Pain levels back down to a 4 for the knee, and 5 for the arms and back strain. Tomorrow is now a doable day.

I loved the lightning picture because it truly suited my day yesterday. I had the darkness of depression, but pain ripped through it to give me something else to think about.

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Nov. 25.

A Shot and a Draw

My Status: Tired
Mood: Fair to Middlin’

Today started off with an appointment to have a shot in my eye. Yes, you read that right. I had shot #3 in the right eye to help reduce a condition of macular edema. And the shot entails a vision test, then dilating the eye, followed by another eye test which uses bright lights and red lasers that play tag while you have to keep your eye on the center. Next a gel to numb the eye and an extremely bright light which is then muted slightly by a colored lens. Finally and apparatus is shoved into your eye to hold it open… and the doctor tells you to keep the other eye open.

HA! By this point, the left eye, having heard all the squeals and pleas for help from the right eye, is tightly closed, using turtle theory—if no one knows I’m here, they’ll pass by and leave me in peace. The shot doesn’t hurt, and in a weird, twisted way it’s kinda cool, but I am NOT a fan of the thing to hold the eye open. Also, the whole dilate one eye and not the other thing leaves me feeling unbalanced.

And I went directly from having the shot in my eye to having my blood drawn for my weekly labs. They need to keep a watch on the blood values to determine whether the chemo is doing what it is expected to do or not. And in my case … the jury is out. My doc isn’t in on Monday mornings—she sees patients Monday afternoons at the office where I go for the blood work, so she wasn’t there. The technician had a question about the blood values and asked the back up doc … you know, the one who forgot to date the sleeping pill prescription … to make a determination. Apparently my platelets are low, as in very low, and the question had to do with whether I was still in some sort of “window” where the low platelet values would be within the “norm” for my condition and length of time since chemo.

How do I know this??? Because Doogie (yes, he’s only behaved like an adolescent pretending to be a doctor, so Doogie it is) discussed the situation with the technician in the middle of the hall outside my open door. And though he said her repeatedly and not my name, I knew they were discussing my case because I was the only female patient in the office at the moment who had just had blood work done. He even stopped in the middle of the discussion to tell the technician a joke. Doogie had better hope that he never does have to see me because he is completely ill-prepared to handle a patient like me. He asked the technician twice to ensure that a copy of the report be left on my doc’s desk.

While I appreciate the fact that my report will have been reviewed by my doctor once she arrived to the office, let me share with you how it feels from the patient perspective. Like Doogie decided he was not competent to make a determination based on my chart, which I’m actually okay with, but if you’re that unsure, perhaps a phone call to confer??? Also it felt as if he was passing the buck, not willing to trust his own judgement in the case. Of course, I shouldn’t have known because it never should have been discussed in the hallway. I may need to chat with my doc the next time I see her and let her know, no matter what the results, I would like an accounting of the findings and what they mean. Brief is fine. But more than, “You’re fine. Ummmm, no need for an injection.” Especially since I wasn’t expecting an injection.

At a guess, I’d say that the results showed that the Neulasta wasn’t doing what they had expected, because the technician questioned whether I had the shot or not. The doc had double-checked that last Monday as well, so while my side effects from the shot have been minimal, it may need a kick in the pants this next time.

I always feel tired on the days when I have the shot in the eye. Partly because after all the poking, prodding, and bright lights, my eye is D—O—N—E! It honestly begs me to crawl in bed and just keep it closed so no one else can torture it. So I won’t be doing any writing tonight. It’s getting close to sign off time so I can relax for a bit and get some good sleep. BUT I was able to get a scene done yesterday that I’ve been trying to get on the page the right way for two weeks. So very stoked about that.

How am I feeling about the low platelet thing? I promised not to pull punches or to pretend things are great if I’m not feeling it, and I will keep my promise. I’m a bit ambivalent about the blood results today. Or lack thereof. I went in hoping to hear I’m doing great because I feel as if things are going well, but instead hear that I don’t need an injection I didn’t know they might do. And the don’t felt a little weak and uncertain. So glad I didn’t need the injection, but a little upside down on not doing a ninja impression on the cancer yet.

The picture for this post immediately grabbed me because I saw it and my first thought was Can’t see the forest for the trees. What is pictured above is the reflection of a larger piece showing a forest. I loved the upside down aspect of the reflection and the overall murkiness of it. It fits today perfectly.

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Nov. 24.

Venturing Out

My Status: Feeling Relaxed
Mood: Amused

Today I actually ventured out of the house. Since having my treatments, I’ve pretty much been a hermit. Not intentionally, but my morning commute to work is now simply crossing the landing to my office, Denny has done the shopping so I wouldn’t have to be out and about with the general public, and so really there has been no reason for me to leave the house. Stir crazy? Not yet. (Give me time.)

But with the way my arms have been, I thought it’d be a good idea to get a massage, and there just happens to be a massage place about a block and a half from me. Convenient, isn’t it? Maybe not so much for the pocketbook, but we’ll see how things go. I’ve had several massages in the past, but one thing I have noticed … no massage therapist is ever the same. And this experience was no different. I did make sure, to the best of my ability, that the therapist did not have a cold before going in. The reason I said to the best of my ability is that the owner and therapist were Chinese with limited capacity for the English language and my Chinese is non-existent.

I will state up front, I don’t have modesty issues—and it’s a good thing. We started off the session, as normal, going into the room and the therapist indicating I was to lie on the table face-down. I mentioned I’d need a towel to place under my chest. For the uninitiated, I have big boobs, and lying on a flat table with no additional support to relieve the pressure hurts. It’s common practice and some therapists offer before I can ask. Today’s therapist nodded and grinned and left the room. I proceeded to undress.

This may be TMI, but when I disrobe for a massage, my preference is to go full Monty. It’s easier for the therapist not to have to work around under garments, and provides me with a better overall massage. I was on the table trying to figure out how to appropriately drape the small bath towel left on the table for the purpose when the knock came at the door. I said, “Just a moment,” and she barged into the room (sans the towel I had requested). Like I said … good thing I don’t have modesty issues. We got me settled and the massage began. Things were going well about half-way through the massage when I heard a new customer arrive. A few others had shown up after me, and all therapists were now engaged, and I heard the new person being told that very thing.

What blew my mind was that he argued that he really wanted a massage now and didn’t want to wait. And it was explained, again, that everyone was busy. Now this is a walk-in, not someone who had an appointment for a specific time. Grumbling, the guy settled down in the lobby area. Fast forward about five minutes. I’m still face-down on the table, half-draped while the therapist worked my entire right back side, from shoulder down to leg and the phone rang. My therapist left to answer the phone.

Leaving the Door. Wide. Open.

Yes, I peeked. Wide open to the hall. I’m draped on one side only (the side away from the door) and the guy from the lobby decides to start pacing the hall. I kept my head down and relaxed. There was nothing I could do except make the situation worse by getting up … and I don’t embarrass easily. So I listen to this guy pacing past my door on his cell phone, and he’s complaining again. “I’m here and have already been waiting for five minutes.”

I started to laugh. For all the world, it sounded as if this guy had decided to call them and make an appointment, for, oh yeah, right now. Coincidentally, he concluded his call, and my therapist returned to the room and continued my massage.

For all my writer friends, this scene is mine… ALL mine. It will go in a book somehow. I will make it happen.

The thing that this therapist did differently than any massage I had experienced (other than leaving the door wide open) was that she knelt on the backs of my legs and used her knees to massage the bottom parts of my glutes while using her hands to work the lower back and top of the glutes. It was an interesting technique. I may be wearing a few bruises (on my back) from the massage, but it was worth getting the knots out.

After my massage, I came home and took a 3 hour nap. Then was putzing around on the computer, chatting with a friend and getting some things posted, picking out the picture for this post, and I started to feel a bit nauseous. And realized the only thing I’d had in the past 9 hours was a 20 oz bottle of G2 (Gatorade light) which took me 3 hours to drink. No WONDER I was getting nauseous. That is one thing I have noticed, when my stomach hits empty, it is much easier for me to feel nauseous. Even if I only have a little something—solid—it helps.

The bout of nausea has been dealt with, and I am currently making up for lost liquid consumption. Especially having had a massage, I need to push fluids. Good thing I had that nap.

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Nov. 22.

How We Forget

My Status: Feeling Good
Mood: Content

Last night I was finishing up some work stuff and trying to figure out what my evening would look like, when I smelled a waxy, unscented, burning candle-like smell coming from downstairs. Denny was downstairs puttering around in the kitchen getting ready for work (he worked graveyard last night). Next thing I know, Elsa (my little blonde pup) is upstairs, plumping both paws on my left leg, giving me the full pick me up treatment and panting hard. I told her no and gently pushed her paws aside. She then ran around to my right leg and repeated her performance. I again told her I wasn’t picking her up and asked what was wrong. Usually, she takes my no and curls up at my feet. Not to be denied, she squeezed past my legs onto the small desk shelf and crawled up my legs into my lap.

She was distraught and shaking, so I cuddled her for a few moments and set her down… she crawled into my lap again after running out to the landing to peer down the stairs. I couldn’t figure out what had her so excited and unnerved that she needed to be held.

Until Denny came up the stairs, rack from the toaster over in hand and said, “You know how you always tell me to put a plate under my food …” and showed me how the plastic plate had melted onto the rack. *sigh* He’s right, I have told him once or twice to make sure he puts a plate under whatever he’s heating up … in the microwave.

Why am I telling this story (other than the fact that it is funny and the house didn’t burn down)? It certainly isn’t to make fun of Denny for making a mistake. Or to point out how on the ball Elsa was in trying to alert me to something be wrong down below. The reason I am sharing this story is it so aptly illustrates how Denny is handling the journey with me through cancer and chemotherapy. As I mentioned before this journey is not mine, and mine alone. My health and well-being affects my family and friends, just as theirs affects me. Truthfully, Denny has been having a tougher time of things than I have. Forgetting things (like my 1st chemo appt.), being more tired, making mistakes he would never otherwise make. Like this one.

It’s not like heating things up in the toaster oven is a foreign activity for him. We use the toaster oven on a daily basis … and I mean we and not me. And yes, I recently had to remind him to put something under the food in the microwave—which he also already knows. So why is he so forgetful? Do I think he’s starting to go into early Alzheimer’s territory?

No. I don’t think dementia is setting in. I truly believe he is suffering from worrying too much about how things are going to go with me, and pushing those feelings down instead of talking about the fears. When you suppress so many feelings, and force yourself to be strong, there are negative side effects. He’s suppressing so much right now, he’s close to suppressing everything, so things that you know and take for granted that you know? Gone. One moment you know you need to take your keys to leave in your car… the next, you’re walking out the door without them. Why are you so forgetful? Because your mind is so occupied with keeping those things from you that you’re afraid to deal with or reveal.

I picture his mind much like the picture above. He will have a clear, almost sunny stretch, where lucid thought is easy, and he has his usual firm grasp on the essentials, but then something will trigger a thought about me, and the clouds come rolling in trying to bury the fears by hiding them in the mist. What are his fears? I can only guess. Fear that I will need more care than he feels capable of. Fear of losing me. Fear of my being in pain. In some ways, it is much easier to be the patient. I’ll deal with the hell when it comes, and I won’t be dealing with it alone. But Denny feels like he is alone in what he has to deal with. How can he possibly burden me with his fears? In some respects, he’s right. At the moment, I’d be able to deal with his fears just fine, but depending on how my journey continues, things may reach a point where I wouldn’t be able to help him deal with his fears. (And I’m hoping that won’t happen, and expect that it won’t—so far anyway.) But he’s not alone. And I hope to help him see that. BEFORE the house burns down. πŸ˜€

So how am I? Pretty good. Trying to get the sleep disruption under control. Still. Better night last night, but the night before that was pitiful. I have been taking the time not writing to do a little reading. Something I love and need to make more time for. I almost started writing last night. The characters (Tim and Tom) were willing and I had opened up the WIP (Work In Progress), but then I closed it. After getting better pain-wise, my right hand was hurting quite a bit after the full day’s work. The past few days have been a lot of coding work and I have not been wearing my compression glove because it was causing too much pain after removal. Which means I have to take extra care in not wearing out my hands with typing.

I tried to get a hair appointment for tomorrow to get my hair cut off (yes, I’m going short), but my stylist is getting over a cold, so the shearing will happen on Wednesday. Today is better pain wise, but I will also not work tonight for the same reason. By the end of the work day, my nerves in my hand, wrist, and forearm are tingling. Not only that… the tingles are migrating to the left. With the bloating and water retention and the little white cells running around and giving all the other blood cells the pep talk, it would sincerely be nice if my body would allow me a chance to write a little. I think my characters have settled down, and they are starting to talk to me again. But tonight, I will be good, and read.

Tomorrow—I write.

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