The post And Then There Was One appeared first on Be the Cat.

Welcome to Rainbow Falls. Last week this time, my head was so fuzzy, I couldn’t think straight, I spent the bulk of the day in bed because of the fatigue levels, I had had a reaction to the chemo the day before and generally felt crappy. Going into chemo this week, I had no idea what to expect. Because the oncologist put me on a precautionary dosage of prednisone for 3 days, I felt better and stronger by Thursday. My fatigue levels weren’t as bad, and my breathing had vastly improved. I’m not saying I was skipping up the stairs, but at least I could climb them without having to take a break afterward to get my breath under control.

Whatever else would happen, at least I was stronger going in than the week before. And this week? No reaction. I saw the doctor after my treatment and we were both cautiously optimistic about the lack of reaction and hopeful it wouldn’t occur later in the day (it did not). But then she gave me some EXCELLENT news. My chemo schedule has changed. The original plan was to have chemo 3 weeks in a row, one day a week, then skip a week and repeat for 6-8 months. Because I am responding so well to the treatment, it will now be 3 weeks in a row, one day week, and then once a month for 4 months. To say I am excited about the reduction in times I’ll have to have an infusion is an understatement

My biggest concern all along was how I would handle the constant barrage on my body of the once a week. My poor body has been through so much over the past couple years that trying to envision that finish line was a bit difficult knowing I would essentially be going once a week without recuperation time in between. Once a month for only one day is SO MUCH better.

The picture for this post is reflective of how I feel. Such a beautiful rainbow image of Niagara Falls. I equate rainbows with hope and going through chemo is a little like going over Niagara Falls in a barrel, so the two together accurately represent my feelings right now. I may still have to navigate the Falls, but hope is shining through for a better tomorrow.

The post What a Difference a Week Makes appeared first on Be the Cat.

Photo by Anna-Louise

Phew!! Time has been flying by so fast, I cannot keep up … with anything. I had good intent to keep everyone updated as to my progress through this round of chemo, but managed one post after Cycle 1, Day 1, and here is it a new year and I have completed Cycle 4, Day 3 (one more day to go, but that is hydration only, so not too bad.) As we approached year’s end, one question kept popping up.

“What are you doing for New Year’s?”

I cracked up. I’ve essentially been a hermit for the past three-and-a-half years, so it isn’t likely I’d suddenly throw on my party togs for a night out on the town … especially not while undergoing chemo. But I did have an answer for the question.

“Mainlining (chemo) drugs and passing out.

Yes, I spent New Year’s Eve hooked up to a drip in a chemo chair and it was my long day, so by the time I got home, I literally had something to eat and passed out. The fireworks here aren’t for celebrating New Year’s Eve. They are in celebration of two more cycles left in this round of chemo. A celebration of going into a new year hopeful for a nice period of remission where I might get some normalcy in life back. A celebration of the hope that I will soon get my creative mojo back so I can finish the book I’ve been tinkering with. It’s all in my head, it just hasn’t hit the page yet.

How have I been doing? For the most part okay. I have been having more sensitivity to the chemo drugs as far as allergic reactions go this time. But that is due to my having a reaction to more than one of the drugs. My fatigue levels are high, so I manage to get through the day job and pick at some of my writing stuff, but haven’t accomplished a whole lot. Which is frustrating at times. But for the most part I focus on getting through the next couple of months with the anticipation that I won’t feel quite so tired and then will be able to get things done.

Part of my ability to get through the day job was that I took the month of November off to give myself extra time to rest. My fatigue levels had been creeping up even before I knew I’d be going through chemo. So I had already planned to use a good chunk of vacation time. At the end of the vacation, I wanted another month. I’m still tired most of the time.

Unfortunately, extreme fatigue does not always equal good sleep. If only it would. HA! The next two months should be interesting. Before I know it, it will be chemo time again. Time to pack the blankets, snacks, liquids, and laptop. Time to dredge up the energy to get out of bed two hours earlier.

The passage of time between cycles is swift, but the time in the chair is long.

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*****drum roll, please*****

FULL REMISSION

The doctor was very pleased with the results (and so, might I add, am I.) This is a huge milestone along the journey. She’s going to check me again in a month to make sure my blood values have stabilized, and then I will go on a every three months monitoring schedule for a while.

Time to take my life back.

*****Lights sparkly confetti cannon fuse*****

*****BOOOOOMMM!!!!*****

The post The Results Are In appeared first on Be the Cat.

***fires off confetti cannon***

I have not posted this chemo cycle like I have done the others … one post per day, because I didn’t want to post a series of DONE posts. Which at the moment is how I feel. DONE.

Done with the monthly trips to kill off the bad blood cells. Done with sitting in a chair for hours on end waiting for the drugs to drip into my system. Done with being a pack mule carrying all the stuff to keep me occupied during those hours. Done with feeling myself swell up like a balloon from water retention. And OH SO READY to get my life back to some semblance of normal.

But as much as I’d love to celebrate (and I will because what is each step forward on life’s journey without a bit of celebration) the END of cancer in my body, I cannot. I will celebrate the end of this round of chemo. I will patiently await for the results of the tests that will determine how effective the chemo has been at ridding me of the bad abnormalities they found in my blood system. But the truth of the matter is, however much I want to say done with cancer, it is not done with me.

This is step 2 along my journey with cancer at best (and may there be many more steps, because as long as I’m stepping, I’m living.) The types of cancer I have, chronic lymphocytic leukemia and small cell non Hodgkin’s lymphoma, are not curable (today), so I will be living with them for a while—may it be a long while. Fortunately, they, by themselves, are not aggressive, and can be managed mostly through monitoring my blood values. As long as I keep up with the monitoring we’ll know how things stand and I’ll be able to take my life back. If the counts get out of whack, then we’ll whack back with some drugs and put them back where they should be.

So for me, this is done with chemo, for now. I don’t know whether I will need chemo again in the future, so I don’t want to be categoric about never needing it again. I might. I don’t know. But for now, let the dance party begin. I am done with this cycle of chemo, and that is enough to celebrate. What happens in the future will happen. And I’ll deal with it, just as I have dealt with this episode. Head on, flinching only when necessary.

The truth is that in looking at the grand design of my life (that which I can see at any rate) since I had to go through chemo—this was good timing. Since I had to do it. I have kept busy. Things have been changing on the writing side of life for the better, and things are getting ready to break open there, so better now than later to be isolated from the rest of the world. I need my energy back because I have so much to accomplish … I’m ready to spread my wings and soar.

The balloons in the post header are for the celebration. It’s time to relaunch my life.

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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.

Tom Wolff
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 Tom (the guy in the picture is my vision of Katie’s best friend, Tom) 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. Tom 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 Tom 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.

The post Working Through Exhaustion appeared first on Be the Cat.

My title of the post today may be a bit cliché, 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.