Tag Archives: LK Gardner-Griffie

Jan. 16.

Cycle 3, Day 3 – Hydration

ButterflyFairy

My Status: Rested
Mood: Good

This will be a short post. Things went well today. I managed to have my first ever hydration day of less than 4 hours. YAY!!! I arrived early and got started about 15 minutes early, so finished in 3.5 hours. Lovin’ the new port for the speed if nothing else. But also loving that they don’t have to stick me to get the IV in. But the BIGGEST thing about today is I am OFFICIALLY 50% of the way through the treatment cycle.

**Sets off sparkly confetti cannon**

The road ahead is getting shorter and hopefully everything is working as it should with the treatments, and I will have a relatively clean bill of health at the end. It is very mentally and emotionally satisfying to hit the half way mark. I am surviving and doing it quite well, all things considered. Today really was a good day—the treatment was shorter, I got to spend time with my mom, and I took a two-hour nap. AND I managed to get some editing done while sitting in the chair. I feel blessed.

The picture today is a combination of butterflies (I see them as dancing) and a serene fairy because I need the fantasy touch 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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Jan. 14.

Cycle 3, Day 1 – Chemo

Tyrol, Austrian Alps

Tyrol, Austrian Alps

My Status: Mush-Brained
Mood: Good

My brain is mush… seriously, it feels numb. So please forgive any typos or nonsense sentences in the following. Today’s chemo went well, although it was a slow process. I arrived at 0900 to start my first bag—the one I had an allergic reaction to during Cycle 2. Six-and-a-half hours later, we finally managed to make it to bag 2. Looking at the time, a collective sigh went up because I’ve never managed bag 2 in under 3.5 hours. But this time it was different. This time we were using the Power PAC … In slightly less than 2 hours bag 2 was history. THAT is the power of the Power PAC.

Take a moment to imagine me sitting there watching the bag deflate, fist pumping, and singing “I got the Power”.

What makes the difference? When using the veins in my arms, they are big enough to handle the IV full flow, so even when not having to run the drip slow because of the potential for allergic reaction, they had to run me slower than most because of my veins. But the Power PAC is installed in my jugular… and if the jugular can’t handle it, then I’m giving up. Not really, but still…. Due to the larger vein size, it can handle the chemo at an improved rate, so likely my day 2 and day 3 times will decrease. Excuse me while I happy dance for a bit. Oh and the increased rate is probably responsible for the brain haze/numbness I’m experiencing at the moment because before I had more time to combat it. Definitely a good thing I have drivers taking me home.

When I went for my labs yesterday, I had the nurse re-bandage my port area because it was ridiculous. I had tape from the outside of my right arm to the middle of my sternum. And gauze… oh my goodness, the gauze. Over the weekend, I thought about offering my services to a football team for the play-offs. I’m sure they would have bounced off my gauze. And one of the most important (to me) aspects is that tomorrow I will be able to shower normally because THERE IS NO NEEDLE IN ME. The chemo nurse took the needle out because there is a limit to the number of days it should be left in… and I was at the max. So tomorrow a new needle for Wednesday and Thursday, and not another one for a month. YA!!!!

I like the picture for this post because it shows a beautiful, gorgeous, really, sky with only a few fluffy white clouds on the horizon. It sums up my day. Hard to be confined for that long day, and the brain numbness takes some getting used to, but overall—Terrific.

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Jan. 09.

Surgery Day

Patagonia, Argentina

Patagonia, Argentina
Miriadna.com

My Status: Feeling pretty good
Mood: Determined

Surgery day started dark and early … the alarm woke us at 04:30. The dogs ignored the alarm going off because they are used to their Papa getting up at odd hours for work. They did a double take when I rousted myself to shower. The surgery itself went very smooth. As a bit of irony, the only trouble they had with the entire process to put in a port because IV’s were getting difficult, was getting the IV for the surgery in. πŸ˜€ My poor hand had to put up with two tries because the first ballooned. Nothing new, right?

Surgery complete, recovery went well, except my nurse asked whether Denny was angry because he was so solemn, so I explained he gets worried about me, and I’m the one making jokes throughout the whole process. FORTUNATELY, everything is covered up so I can’t see the needle… YAY!!! This makes me happy because what I don’t see doesn’t bother me. The bandage is a little extreme though. I feel like I have a combination of half a football pad and half a neck brace on.

I literally have to turn my body when looking to the left, down is easy, but up pulls. This is caused by the tape on my neck. I figure tonight while I sleep, the tape will pop and in the morning I’ll adjust it to be more comfortable for the next few days. I had to laugh because the first thing I did was pop the tape while getting dressed. That’s when they went tape crazy… trying to keep it from popping when I lifted my arms, they added gauze and tape.

Normally, I’d take a little more time to explain my day, but I came home and went straight to work for the day job because my colleague was having a surgery this afternoon and someone needed to be there. And I am so close to the end of my first round edits, nothing, not even surgery, takes precedence. I will be finished (tonight if I can last)

Oh, I now have a little key chain do-dad explaining the port to carry with me at all times. I have the Power Pack—a fitting name. The picture at the top was chosen because it is gorgeous, dramatic clouds with sunshine bursting through. A perfect picture for the day.

Off to finish my edits. πŸ˜€

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Jan. 06.

Next Step Surgery

Novgorod Kremlin

Novgorod Kremlin

My Status: Tired
Mood: Cheery

I haven’t posted for a while because of the holidays, but now that they are past, it’s time to give you the latest updates. I saw my doc on the 30th and she gave me a prescription for the port catheter so we won’t be hunting for a “good” vein anymore to use for chemo. I saw the surgeon today and the surgery is set for Thursday morning, bright and early. The doc had requested the port be put in on Monday, the 13th, but the surgeon overrode her decision because he felt I’d be too prone to infection if we attempted to use the port on the 14th.

I’m actually pretty good with all of it, except one phrase skeeves me out. It is even on the prescription … “leave the needle in.” To someone who is mildly needle phobic, this phrase turns my stomach. So now I have to wrap my mind around the fact that I will have a needle in me from Thursday through at least Tuesday. It’s going to take ALL of my skills in NOT thinking about it to get me through.

But, just in case, someone better have several choruses of Soft Kitty ready to talk me off the ledge. I’ll be fine if I don’t think about it … so I’d better stop now, or total freak out will ensue. Believe it or not, I have always been very good about receiving shots and giving blood, but horrible with seeing the actual needle. Oh well. *conjures up visions of rainbows and unicorns*

Over the holidays, I managed to find my writing mojo again, and have finished the draft of One-Way Ticket, the fourth book in the Misfit McCabe series. I’m so excited about finishing up this book, words fail me. I can’t wait until you have a chance to meet the characters between the covers. Although I don’t normally jump right into edits, there was enough time between writing the bulk of the book and finishing it, so I’m in the middle of first round edits and things are going very well. And I’m busting to get back to the edits so I can get some feedback and polish it up and make it even shinier than it was before.

The picture at the top of this post was chosen for two reasons … a nod to the weather some of my friends across the country are experiencing while we are baking in Southern California during the day. And the Kremlin a nod to my friend, Jane Kindred and her love of Russia, and the release of her latest book, Prince of Tricks. Jane is having a book launch party tomorrow (1/7/14), so stop by and party virtually for a chance to win some swag.

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Dec. 21.

Life Beyond Normal

ChristmasBells

My Status: Headache ascendant
Mood: Philosophical

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

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

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

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

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

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

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

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Dec. 19.

Cycle 2, Day 3 – Hydration

My Status: Feeling okay
Mood: Good mood in progress

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

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

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

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

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

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

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Dec. 18.

Cycle 2, Day 2 – Chemo

Christmas Candles

Christmas Candles

My Status: Tired
Mood: Doing better

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

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

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

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

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

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Dec. 17.

Cycle 2, Day 1 Chemo

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

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

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

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

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

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

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

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

We’ll see what tomorrow brings.

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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. 11.

A Difference in Perspective

My Status: Improving
Mood: Appeased

Yesterday I was a bit down. Discouraged because I wasn’t able to go through with the chemo treatment as planned. I had actually thought I might not be able to do so because my allergies had flared because we have had some winds and I had been coughing. I still am. Post-nasal-drip coughs, but I woke up this morning wheezing. It’s the reason I am trying to view the non-chemo this week as a blessing. I do believe it is probably best that I did not undergo the treatments.

So why am I rehashing what I said yesterday? Because I figured out why I took the lack of treatment so hard. If I hadn’t been able to have the treatments because of the condition of my lungs, that is a long-known issue, and one I have lived with my entire life. The potential for something to go wrong with my lungs this time of year is pretty great, and therefore somewhat anticipated. But to be told to go home because of my blood results was something different.

Here’s how I heard it: You’re too sick for chemo. It’s hard enough for me to grasp the fact that I’m sick. Most days. But now I’m too sick for the treatment??? It made me feel like the picture above … climbing a treacherous path, not able to see clearly ahead. Just looking at that picture I feel claustrophobic. Conditions icy and dark, meaning I will slip and fall. And I did fall … mood-wise. Yesterday and part of this morning were a little rough. Not to the point of despair, but trying to focus on the positive was out of reach.

I am doing better mood-wise now. And part of that is due to seeing my regular doc for the Blepharitis recheck. The eye infection has cleared—YAY!!!—but that isn’t what caused my mood to lift. I mentioned the elevated liver enzymes to my doc and he agreed that the issue was the anti-inflammatories I took due to the knee pain. And having him confirm my gut instinct helped me. I can now focus on the fact that there is a cause which is no longer in effect. And he recommended Icy Hot for any future flare ups while I’m going through the chemo.

And he was a tad cranky because the oncologist did not advise him of the blood results. He had called her with the Blepharitis diagnosis and likes to be kept in the loop about what is going on with my treatments. I expect another phone call will be made. And I’m a little cranky that they didn’t call me on Monday to let me know the results. As they SHOULD have.

Tonight I have gained a little perspective about the road ahead. It’s still just as treacherous. It’s icy and dark, and the trek won’t be easy, but I can once again see the light. A beacon to guide me through my journey. Amazing how different the same road looks with different perspective, right?

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Dec. 10.

False Start

Christmas ball by fotoman228

Christmas ball by fotoman228

My Status: Tired and Congested
Mood: Disappointed

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

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

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

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

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

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

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Dec. 09.

Chemo Eve

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. 06.

Crankiness and Hope

Christmas by Ironii

Christmas by Ironii

My Status: Feeling Better
Mood: Irritated

Warning—what follows may be a bit of a ramble
I ain’t gonna lie—this week has been a rough one. Starting off with the touch of depression which was ripped apart by knee pain, which then morphed into overall body pain, followed up with an eye infection… and that was just the physical part. Even worse was the work week where each day had another bomb to deliver. Fire-fighting all week leaves me feeling unaccomplished and wrung out. But today was Friday and I woke up with my pain levels well under control. I should be glad, right?

Wrong. I had one of those rare mornings where every little thing irritated me. Things that I normally take in my stride caused my inner Oscar-the-Grouch to start throwing slimy banana peels all over the place. Fortunately, being alone with the pups allowed me to vent without hurting anyone’s feelings. The girls are used to my talking to myself all the time anyway, so they just let me grumble without comment. And the most irritating thing?? Knowing I was being cranky about things—picky, itty-bitty, not really all that important things—things that weren’t worth the upset.

So you’d think the work week would want to lighten up on Friday … not a chance. Things kept going along the same tail-spin they’d been in all week. Which means I didn’t get to something I need to have done before Tuesday. Hopefully Monday will be a kinder day. The deadline is because I start my next chemo cycle on Tuesday and I need to put together instructions for someone who is not familiar with the things I’ve built on what to do if they don’t function properly because my colleague who would normally be holding down the fort has been summoned for jury duty. I’m actually hoping everything decided to blow a gasket this week, so next week will be smooth—but I know better.

Then early afternoon, I received a message from a friend sending good thoughts and virtual hugs and it helped turn my sour day right-side up again. Work finally finished for the week, I still felt wiped out, but no longer cranky. Putting in my headphones, I listened to some music to help me unwind, and finally feel a bit more centered. Music is my creative fuel.

So while listening, unwinding, and trying to decide whether it is more reading or whether words on the page were finally going to happen, I saw a link to the below video on Facebook. I am so glad I took out my headphones long enough to listen to what this 13-year-old boy has to say. Kids like this give me so much hope for the future. What he has to say applies not only to kids and education, but to life and we can all learn from it.

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Dec. 03.

Heeeey, Blepharitis

My Status: Are you kidding me???
Mood: Cheerful πŸ˜€

I couldn’t help but title the post this way… and if you don’t hear the Macarena playing in the background, then I don’t know what’s wrong. So let’s recap—knee is miraculously better, scudding along at 0 on the pain scale (may it stay there forever), back and arms are improving and will probably be pretty much back to normal tomorrow. So what else could go wrong?

I’m really going to have to stop asking that question.

Blepharitis—that’s what else could go wrong. When I awoke this morning, my left eye was bloodshot, rims were red, and it felt like I had little rocks in the corner near the tear-duct. My eyelids were both puffy as well, which they have been because my allergies have been elevated, but this felt different than allergies for the eyes. *sigh* A phone call to my regular doc later and I had a lunch time appointment for him to look at my infected eye.

Any other time, I’d have been tempted to use my allergy eye drops, warm compresses and wait a few days to see whether it cleared. But both my regular doc and my oncologist have made it perfectly clear, even to a stubborn-headed mule like me, that ANY infection was to be treated immediately. That I cannot afford to have any infection take hold in my system. Especially now since I had to have steroids for the knee issue, which further weakens my immune system. So the call to the doc was made.

Bleh!

Here’s what the informational sheet my doc provided has to say about it:

Blepharitis is a common and persistent inflammation of the eyelids. … Bacteria reside on the surface of everyone’s skin, but in certain individuals they thrive in the skin at the base of the eyelashes. The resulting irritation causes dandruff-like scales and particles to form along the lashes and eyelid margins.

So now I will need to use antibiotic eye drops 4 times daily, warm compresses to help descale my eyes, and wash them ever so gently with a solution of baby shampoo (Baby Magic is the best—no petroleum products in it). Or, potentially, I could lose my eyelashes. I know I’ve talked a bit about hair loss and how it’s not likely to happen from chemo, but now I have something that could potentially rob my eyes of their lashes? Good grief. I wonder whether I could have permanent eyelashes grafted on that are hot pink????

HolidayHairWhat do you do when life keeps raining on your physical well-being? *shrugs* I bought a purple holiday hat with bling on the brim and took a goofy picture of myself and posted it to Facebook. Why??? Because I can and it helps me to focus on things OTHER than my ridiculous health. Don’t get me wrong, I am taking the health thing seriously, and unless I tell them otherwise, I do follow doctor’s orders, but I also have to laugh because we have reached the point of if it’s not one thing, it’s another. By posting my pic on Facebook, I got to take a couple trips down memory lane with the folks who have known me for donkey’s years. I was able to reminisce about writing an epic ‘Twas the Night Before Christmas revision with my friend Nancy when we both worked at K-Mart. And I think there is a unanimous opinion that my curls peeping out from the cap bear a striking resemblance to Herbie, the Dentist elf in the Christmas Classic, Rudolph, the Red-Nosed Reindeer. So for the season, I shall be LK, the writer elf.

Oh and if you haven’t twigged it yet, I do love the holiday season, and will probably be decorating the posts with Christmassy stuff through the month.

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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. 28.

Being Curly and Blessed

My Status: Feeling Good
Mood: Fabulous

BushWomanThis may be a short post (but knowing me, it won’t be πŸ˜€ ) A few days ago, I talked about getting my hair chopped off because it has become quite bushy and out of control, and for those who have not yet met me in person, I have a ton of hair. I have been waiting to get it cut because I needed to know whether I was going to add pink to it … and since I won’t be, I decided it could all get cut off and then I’ll grow it out again. This picture doesn’t quite do it justice as far as showing the out-of-controlness that has taken over my head. For once it was behaving, but it does show some of the waves I have in my hair, as well as the fact that I take terrible pictures of myself. Oh, you can also see my puffy eyes—my eyes are small, but they are not that small. Allergies have been trying to take up residence and I am battling them back as best I can. They are NOT welcome here.

 

CurlySueThe picture at the top of this piece speaks to me about the leaves of change. The fall has always been an exciting time of change. And this fall has been no different. The old things fall away to make room for those things new. For me, the cutting of my hair is symbolic of the changes going on. I needed at the very least a trim, but the idea to go short took hold for several reasons. The root of which is that I do like to do different things with my hair, and since it’s not the best idea to color it for awhile, I wanted to do something, and going short gives me a different versatility than when shoulder length or to my waist. And here’s the best thing of all … it’ll grow back if I want it to. My hair is a change I can control (or at least have the illusion of control) when right now so many things in my body are not within my control. AND it was a blast getting it cut. If I can’t have fun with this, then what is the point?

The stylist knew I had a strong wave in my hair, but she was surprised by the amount of curl that came out. She had so much fun playing with it while cutting it. I’ve dealt with it’s stubborn curliness for too many years to be surprised. Wearing it long does help to tame it a bit, so now it’ll have the chance to live life on the wild side. πŸ™‚ And believe it or not, the long hair helped to hide some of the eye puffiness. (I should not be allowed to try taking self-portraits, but I wanted to post the before and after pics)

All in all, it was a good day. I worked this morning and accomplished a few things… always good. Then I had my hair cut and picked up the girls (my dogs, Phoenix and Elsa) from the groomers. Next Denny and I watched REDS 2 and laughed throughout. I have made the sweet potatoes (my contribution to tomorrow’s feast) and my mother arrived safely at her destination despite holiday traffic and suspect weather forecasts.

It is now Thanksgiving … and I have so MUCH to be thankful for, so here goes. I’m Thankful for:

  • My family—I love them so much and they are there for me when I need them. From immediate to extended, I do count on them. And my pups are always there for me (and a part of my family) and when I’m down, they curl up beside me and I feel better.
  • Friends—I have been blessed in the friends I have. I marvel almost every day over the people in my life and how supportive and caring they are. I hope I am as good a friend to them.
  • The writing community—although I count so many of you as friends, I wanted to express my thankfulness for having a community I can reach out to when celebrating the good things, and to help me over the stump when things aren’t going as well. For the most part, I see writers helping writers, and I love that.
  • My Characters—Without them, I wouldn’t be who I am … a little off-center, but they help me tell the stories that will have an impact.
  • My day job—I am thankful to have a workplace and work that fulfills me in addition to allowing me to earn a paycheck. It helps me so much, especially right now, to have a job to focus on when I can’t focus on other things.
  • My doctors—They will see me through this bump in the road and help make me stronger on the other side of it.
  • For Chemotherapy—While it may make me feel sick, I am so thankful science has developed drugs that will help my sick body become better. Several years ago this would not have been possible. In fact, several years ago, I wouldn’t have even known I was sick and we wouldn’t know that something needed to be done. I’d just continue to feel unwell and that something was vaguely wrong.
  • For being alive—I have always been thankful for each and every day I’ve been given. Most days are good ones, and as long as I can say that, I will continue to feel blessed.

There are so many more things I’m thankful for, but I simply cannot list them all. I have been blessed by all I have been given and hope that I pass those blessings along to others. That is my goal in life.

HappyThanksgiving

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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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