Tag Archives: LK Gardner-Griffie

Nov. 19.

An Evening of Rest

My Status: Feeling Good
Mood: Cranky

Yesterday I thought I’d try an evening of rest. I’m back to work, albeit from home, knew I wouldn’t be writing, didn’t really want to do anything, so rest seemed like a good idea. Here’s the thing—I don’t rest well. I never have. Even when putting my feet up, kicking back and relaxing, my mind is usually working on something, in one way or another. Sooooo the rest thing … didn’t go all that well. So I tried going to bed early.

The sleep thing wasn’t happening either. *sigh* I’ll be tired, and as soon as my head hits the pillow … it’s not that my mind won’t turn off—my body won’t. Since having the chemo treatments, every time I hop in bed my stomach turns into a bubble factory. Literally. I am manufacturing so much gas, that if I could take what’s inside me, distill it, and convert it into fuel form, Denny and I would never buy another tank of gas. It’s ridiculous. And on top of that, my legs go into hyper-restless gear. It reaches the point where I want to give up and just stay up … forever.

But last night, after tossing and turning and keeping the dogs awake for two hours (or more), I had a brain wave. I haven’t been nauseous, but what if the same home remedies worked… a piece of toast, a few crackers to soak up whatever is burbling around inside me. And for the restless legs, a hot bath. Things like Gas-X were proving woefully inadequate against my bubble factory, so it was worth a try. What do you know? It worked.

In a very short time, I’m going to try the same thing (without the tossing and turning first) and see whether I was simply so exhausted anything would have worked, or whether this is a viable answer. I’ll let you know. Hopefully rest will come easily tonight… I need it.

Today has been a somewhat cranky day. I don’t have them very often, but today, it jumped me from the very start. What caused the crankiness? *shrugs* It could be the trouble getting to sleep. It could be simply what my body is going through and to be expected from time to time. Or it could be the increasingly unbearable silence in my head. My characters still aren’t speaking to me … not in the way they need to. I’m not writing—and this is bad. I need to write, but in order to do so, I need my characters to tell me what needs to go down on the page. Yes, I have an idea, but without them, it is only words, and has no meaning. No heart.

I did see the doc yesterday and all my blood work came back as being on track, and the doc is pleased with how I’m doing. So those are positive things.

If any of my fellow writers see my characters gallivanting about—tell them they are needed at home. Pronto!!

The picture at the top of the post is symbolic of my bubble factory. 🙂

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Nov. 17.

A Bit of the Hair …

My Status: Feeling Good
Mood: Feeling accomplished – laundry done, beds made—who could ask for more?

For those of you coming along with me on this journey who do not have an understanding of how weird and twisted a writer’s brain can be, this post may sound weird and twisted. I will preface it by stating that for me as a writer, my characters have to live in my head in order to come out on the page as full-fledged people, so my characters talk to me, we have conversations, we argue, and I have, at times, received the full-on silent treatment. What affects me affects my characters, and what affects them affects me.

I haven’t written a lot since finding out I had to have chemo. First because I had to get things taken care of in a short time frame, and second because I’m not getting a lot of cooperation from my gang. I am currently in the process of trying to finish up the 4th book in the Misfit McCabe series, One Way Ticket Home, so I can move on to my next project. This particular book has taken some unexpected twists and turns and I have to tell you, I love what has happened with it. I can’t wait to give everyone a chance to experience it. I knew the girls were all being a bit stand-offish, and we hadn’t had a chance to fully discuss what would be happening with me and what we could all expect—it’s kind of hard to have that conversation when you really don’t know yourself.

I thought maybe working through a scene with the boys was the way to ease into it, but I needed them to fight … and they wouldn’t. They didn’t want to “gross me out” while I was connected to the tubes. Ultimately, I think I will be able to write during the six hour day, if for no other reason than to escape the fact that I am connected to a drip for six hours. But this round it was not to be so.

The boys at least showed up. The girls refused to even come talk to me until after my first treatment. Then Janie came through. Janie is a character from One Way Ticket Home, and I love this character so much, I can’t wait for you to meet her. Here’s how the conversation went.

Me: Hey, Janie.
Janie: *stops dead, eyes widen, hands cover mouth*
Me: What’s wrong?
Janie: You still have hair!

And that’s how I found out Katie had told all the girls I was going to lose my hair. And they were all weirded out by it. I had to tell each one of them that with my particular treatment, hair loss is not common, so it is unlikely that I will lose my hair, but even if I did, it wouldn’t be a big deal for me. I know that hair loss is a big deal for some people (men and women) during the chemotherapy process, and whatever is a big issue for you, is a big issue. I’m the first to say so. I don’t think being upset by hair loss means you’re vain. It is the mourning of loss and the process you have to go through in search of health. Hair loss for me, simply isn’t one of my issues. If it starts coming out, I’ll shave my head, just to be done with it. And then I’m going to have a blast shopping for some outrageous wigs (and if I can swing it, matching eyebrows), and some killer scarves.

KewpieWildIn fact, one of the questions I started debating in the middle of the night (Denny had to start work at 0300, so we had some awake time during the wee hours) was whether I should get my hair trimmed, or cut short. It needs to be cut or I’ll soon be the wild-haired kewpie doll visiting all your nightmares. The hair has reached the bushy, totally out of control stage and has been there for a few weeks driving me crazy. But I didn’t want to have it done until I knew whether I was getting a cut or a cut and having a bit of color put back in. The color will have to wait, so now the big question is trimmed to the shoulders or a really short style. Warning: If you choose really short, you may have to listen to me whine during the growing back out stage.

I understand why the girls were upset by thinking I would lose my hair—for teenage girls (or near teen as in the case of Angela) and in fact, for most people, hair makes a statement about you as a person. They fear being targeted as different outside of their control. I like my hair, I always have, but maybe I feel a bit differently about it because people have wanted to touch it and play with it my entire life. And it annoys me when it gets in my way, so when working I usually have it up and out of the way. I once cut it all off because I realized it was taking me over half an hour on a daily basis just to tame it.

Or maybe hair loss as something not so big sunk in when I took a modeling course at the age of thirteen, and my instructor had recently grown back her hair, and freely discussed not letting the loss of a few strands of hair slow her down. She was gorgeous, and if she wasn’t bothered by it, then why should I worry? And I really do plan to buy wigs, should I lose my hair—hot pink, bright purple, and rainbow … because I can. Because it will be fun. Because it will give me a chance to talk about it. And because if I do lose the hair, it will grow back … and if it doesn’t? *shrugs* I still say not a big deal. I can live a long time without hair.

So the girls are doing a bit better knowing the hair loss thing is not likely, and even though they are not as comfortable with it as I am, they will be okay if it does happen. But they still haven’t been quite ready to work. No one seems to want to upset me at the moment. *rolls eyes* I’m trying to get across to them, life doesn’t stop for this. Life continues on.

My social media circles are a testament to the circle of life. Right now in my stream I have a grandmother happily posting pictures of her brand-new grand-baby, a friend is preparing for youngest son’s wedding in 5 days, another friend is on her way home because her mother passed away this morning. My stream shares triumphs and despair, sickness and health. This cancer thing is only a part of my life, it is not going to be allowed to consume my life until we get rid of it. There is too much life going on, and if I stopped everything, I’d miss it.

Now all I have to do is convince my characters.

The picture at the top of the post is perfect for talking about my characters—a castle growing out of a cliff and reaching toward the clouds. So very much a part of being a writer. And all this discussion of hair makes me think Hair, so have posted the song below:

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Nov. 16.

Day of Rest

My Status: Rested
Mood: Good

Sleep has been accomplished. And not only the drugged variety, which was interrupted by several trips during the night to excrete the extra fluids I’ve been carrying around, but this afternoon I had a honest-to-goodness, natural sleep, nap. Too much information? As I mentioned in my first post: My aim is to share my experiences with you, good, bad, horrid, and laughable.

Why would I share so much? For a few reasons:

  • Because it helps me to get it out. And this is the number one reason.
  • This is a journey and while it may be primarily MY journey, I am not on it alone.
  • Cancer used to be a word which was whispered from one person to the next, something to fear. It is far too common and affects too many people for us to continue whispering the word, but we still treat the symptoms, treatments, and journey with the same fear. Maybe by talking about all the issues we can move to a realm where we can freely discuss what is happening without that sense of awe and fear.
    • And this cycles back up to the first and second points for me. If I don’t feel free to discuss the gritty details, then I am isolated in my journey. I feel cut off from my support network, and brings everyone else along on a false journey.
  • As my dad used to say, “Life isn’t all peaches and cream.
  • By talking about that which causes fear, lessens the fear and gives us back a measure of control (however illusive)
  • And because I’m not much one for orthodox conventions. Sue me.

A common misconception is that the patient is travelling down the road toward health on their own. This couldn’t be further from the truth. This diagnosis, this journey, impacts not only me, but anyone who cares about me. We all bring our own backgrounds to the particular issue—in this case, Leukemia/Lymphoma + bad guy abnormalities = chemotherapy. While I am the one who is getting bruised, and has had the drips going into me, I am not the only one dealing with the diagnosis. Denny, although he will not admit it to me, is struggling with the diagnosis, and the reality of what I’m going through. Things have not been bad so far, which is fantastic, but he’s worried about what might lie ahead.

Everyone wants to do something to help. It is a natural, communal instinct. When you hear someone has trouble, you want to reach out and help those in need. The problem is that right now, there’s not a whole lot anyone can do for me. Except be there; sending prayers, good thoughts, good vibes, jokes, commiseration, reading these posts, commenting, etc. (Please don’t stop.)

Right now the posts have been primarily focused on those gritty details, but I’m sure I’ll break into other types of posts along the way … I’m a writer, and what affects me affects my characters, so I’m sure there will be a post or two about that in the not too distant future. I haven’t accomplished a lot of writing this week, but I’m okay with that as well. I know when I need it to be my focus, it will be there for me, taking me away from some of the reality.

Triumph of the day: Due to the aforementioned interruptions to sleep last night, I have lost 6 lbs of the water weight which had piled on due to the steroids. YAY!!! for accomplishments. I am still carrying excess water (which is immediately evident when I remove my compression glove—the line hangs around for a few hours), but that the water is making an effort to leave cheers me up. I thought I might be headed into nauseous country this morning, but thanks to my friend Mindy, I took her advice and took the nausea medication BEFORE there was an issue, and ultimately have remained nausea free for the remainder of the day. BOO-YA for the little things. I did have the after-white-cell-boosting fever, but it has now dissipated along with the headache it brought along for the ride. Fortunately, it didn’t exceed the mark where I needed to call anyone about it, so rest, fluids, and eating slowly has prevailed to make this day a good one. My head is still not up to writing, but that’s okay… there is always tomorrow, and with what I hope is another good night sleep, the words will start to flow.

The picture at the top of this post symbolizes how I feel about finally getting sleep. Rainbows have always been very special to me … because they’re rainbows and all colorful and sparkly. An awesome refraction of light. They are the promise of good things ahead.

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Nov. 15.

On the Quest for Oblivion

My Status: Tired
Mood: Relaxed

Not to sound like a broken record, but I’m tired today. I rested better last night than the night before, but sleep was still elusive. Fortunately, the issue with the prescription has been resolved, and shortly I will be floating in the fairy clouds pictured above enjoying a wonderful sleep.

Today marked my return to work—virtually. I have reconfigured my desk space in my office so I can work from home to minimize the possibility of infection, especially during the cold and flu season. There are a lot of reasons I feel that continuing to work as much as I can will be a good thing. First off, and most importantly, it will help me mentally to keep my spirits up. Things have changed, but I’m still able to do my job, so I can’t be THAT sick, right? I won’t bore everyone with all the other reasons … suffice it to say, there are reasons working right now is a positive thing. It does take a chunk out of my day, though. 😉

How are things going otherwise? Pretty well, I think. My right hand and forearm still hurt, and I’m still retaining water, but I’m hoping those things will dissipate now that I am not taking the steroid for a while. And I’m going to get this whole lack of sleep thing handled, so tomorrow should be good. I had one little issue though… yesterday they forgot to give me an injection to help boost my white cell counts. So I ran over during lunch and got the injection. And the injection has common side effects of making your bones ache, and you potentially run a fever, oh, and be alert for a severe allergic reaction… like if you can’t breathe, or pain that means your spleen is about to rupture but other than that, you’ll be fine. Apparently they took it seriously when I walked in and said, Okay, I’m here so you can torture me some more.. But *crosses fingers* so far, so good.

I don’t really have any more than that for tonight (and yes, I heard that collective sigh of relief) because I have things I want to talk about, but my brain is mush from being sleep-deprived, so we could travel into the realm of the ridiculous if I allowed my brain to lead the way here.

A big shout out to my sister, Dana for her birthday. I remember this day those years ago like it was yesterday. I knew someone special would be arriving, and I was right. Hope you had a great day.

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Nov. 14.

Chemo Cycle 1, Day 3 – Hydration

My Status: Tired
Mood: Meh Meh

I’m just going to jump in and say, I didn’t sleep well last night. Not because of any other unpleasant side effects (because I really haven’t had many), but I just couldn’t sleep. So I was tired today. I am STILL tired, and yet, not sure I will be able to sleep tonight. Also my right arm hurts because I had to have the chemo in the back of the hand, and I am retaining water like I’m a camel. Pretty soon I’ll have a visible hump. And the sleeplessness and water retention are both due to the steroid given during the chemo to make sure I don’t have an adverse reaction.

Yippy, Skippy—the thing to stop me from having a reaction is causing the issues. Lucky me. And I mean that in the most sarcastic and joking way. I know the steroid stopped me from having a respiratory reaction to the chemo, because on day 1, I did have a slight tightening in the chest at one point—enough to make me think about alerting the doctor, but then the wheeze loosened, and there was no need. The drugs were doing what they were supposed to.

So the side effects of sleeplessness and water retention we can deal with. The only reason I’m a bit miffed at the moment is that I mentioned the need for a sleep aid when I came in, and the doctor had to leave early, so the other doctor wound up writing the prescription … and forgot to DATE it. The pharmacy cannot fill a prescription with no date and will have to contact the doctor—who left early because of a meeting, and will not be available. I’m exhausted, but the night ahead could be a long one. When I crawl into bed, I’m going to pretend I’m floating in the boat in the picture above, on a nice sunny day—the perfect temperature, with a slight breeze as the water gently laps against the boat and rocks me to sleep. With luck (too bad I don’t have a slug of rum) I’ll sleep.

The bruise on my left arm, which now by the way looks as if someone has put an eggplant cutting on my arm, it’s so nice and purply-black. doesn’t hurt one whit. On my right arm, where there is minimal bruising, I hurt. It hurts to extend my fingers to pick things up and reaching down to pick things up from the floor—forget it. Pain shoots up my arm. I’m sure the pain is linked to the water retention. I have gained two pounds each day and have eaten less, so the doc wants me to flush my system with plain water because I am sensitive to the sodium in the drugs they’re giving me. Tonight, that plain water has been mixed with tea and milk to help me relax and hopefully sleep. 🙂

Speaking of bruises, during the night I rolled over and my left hand simply flopped on my right arm and sent sharp radiating pain throughout my arm … sure enough, this morning I see the beginning of a bruise. My hand barely touched the arm. I just hit it at the wrong point.

Small veins caused me to be there longer than the expected 3 hour appointment again tonight. Probably half an hour later than anticipated. But that I don’t really mind so far. Now I should stop complaining and tell everyone what went right today. My mom misread the treatment schedule and thought the appointment was for noon instead of 2 PM. This meant she was early to pick me up instead of late. YAY for small favors, and knocking one worry out of the way. And hubs was able to track down some arnica to put on my bruise. He had to go to multiple places, but persevered until he found some, so he gets the gold star for the day.

 

GoldStar

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Nov. 13.

Chemo Cycle 1, Day 2

WhereIsShe

My Status: Overall good day.
Mood: Cheerful 😀

Apparently this cycle of chemo treatment is going to have the theme of bump in the road followed by a successful treatment where I’m still dealing with it fine. The bump in the road is characterized by the picture for this piece. And anyone who knows my family has NO trouble identifying the she in the graphic.

My mother is one of the most wonderful people on this planet, and she has so many special talents, she shares her gifts with all, has the most amazing heart, but one thing she was born completely without—a sense of time. I love her to death and beyond, but have accepted for many years, the area where she will not come through consistently is being somewhere on time. She sets off with the best intentions in the world, but … sometimes it stays at intention.

The plan for this week was that mom would provide the chemo treatment limo service because hubs didn’t know whether he’d be working or not. The plan for this morning was that we leave my place at 9:00 because my appointment was for 10:00 at the doctor’s other facility, which is farther from my house, and it would be the first time travelling there. Plus, right now there is surface street construction ongoing everywhere, as well as freeway construction, so leaving a little padding (and I mean little) on the time was wise.

The problem? 9:00 arrives and no mom. Not unusual … 9:05—same status … 9:10—same. I’m beginning to get concerned, because my mom is usually pretty good about letting me know when she leaves, so I have an approximate arrival time, and she hadn’t called. She has also not been in the best health herself and said she had been sleeping through her alarm. The home phone is not sufficient to wake her if that is the case (and her message box was full so leaving a message was not possible) and her cell phone is safely in its box on the pool table in the family room, where she will also not hear it if it rings. My concern at that point was not whether I would make it to my appointment on time, but whether she was okay. Because fortunately, I did have a back up plan in place, and standing right next to me. Hubs did not get scheduled for today, so he was ready, willing, and able to take me to the appointment (and I put all my appointments in his phone last night so he’d get the reminders. 🙂 )

At 9:20 I left a message for my mom on her cell because I knew if we didn’t leave then, we’d be late for my appointment. Mom called having reached our place at about 9:30. She had been having a few issues which delayed her departure (not uncommon), but had we waited and had she driven, I’d have been about half an hour late. I drove us to the appointment (I drive faster), on the freeway, in the car pool lane (which she usually won’t drive) and we managed to make it and find the building, arriving smack on time. YAY for small successes.

MissedBruiseNext minor and not unanticipated bump in the chemo road? Not able to get the vein. I always explain upfront to all people who draw my blood, try to insert a drip, etc. that what they are looking at is not necessarily what is going to work. I have small, squirrelly veins. Which means they are small, so a challenge right off, the squirrelly means that now you see it, now you don’t, and to make matters worse, they collapse easily. I also tell the technician/nurse to take their time up front, because that usually means a better chance of success. And I have met with arrogance to my statements, like somehow a lifetime of having people miss the vein will somehow not be the case when they do the sticking. As long as the person listens and gives it their best try, I don’t have a problem with an occasional miss. It happens to everyone—even my regular doctor who has a perfect record, except for once, and he has drawn my blood countless times over the years. The picture you see is what happened today. Yes, this is after it has been iced.

I don’t blame my chemo nurse. She listened, she communicated that she understood exactly what I meant as she took her time trying to find a good candidate—especially when one she thought was going to do just fine suddenly disappeared on her, and it was prior to the stick (thank goodness). And technically the bruise is not from a “miss”. She got the vein. The problem was that the vein was not cooperating with allowing the drip to move on through. It bubbled. It bulged. The drip was quickly turned off and the doctor happened to walk past in the hall, so I made a joke about her having it notated in my chart challenging. 🙂 She came in and took a look and said she’d do it and put it in the back of my right hand after a brief discussion (from the peanut gallery = me) about keeping the drip lines out of the way so I could work on my laptop, and the fact that my compression glove wouldn’t work as well with the drip in the way. After reminding me of the priorities (I said laptop, of course #joking), we got everything switched over with only one minor hiccough where the vein, which had stopped feeding back blood, decided to start pumping it out.

I may have turned a slight shade of green at that point. I don’t do well with blood. If someone is hurt and I have to react to take care of the situation, I’m fine until the situation is over, then get queasy. But in this case, I couldn’t do anything to stop it, so queasy hit me pretty quickly. But once they got it out and the pillow case changed, I was fine. I’ll be wearing the battle scar for a few days. But as I said, this was not an unanticipated bump.

The remainder of the visit was uneventful. Hubs was able to come back and sit with me for the entire time, because it was a slow day and there weren’t any other patients scheduled for chemo while I was there. We were able to leave, half an hour earlier than anticipated, I had a little lunch, and took a nice nap in the afternoon. The nap was necessary because I had an interrupted sleep due to my first bout of chemo diarrhea, which was not all that bad, but did have me up a few times.

One thing I wanted to say, and I mean this from the heart. I am very early in my journey still, and I know that things will not always be going as smoothly as they have so far, but I couldn’t ask for a better set of cheerleaders along my way. You guys rock!!!! Your support through this time means more than I can say, because no matter how alone I am, I know you are at the other end of the keyboard and are there for me every step along the way.

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Nov. 12.

Chemo Cycle 1, Day 1

My Status: Overall good day.
Mood: Cheerful 😀

Today started off after an unusual, but completely welcomed, good night sleep—only to be followed by the first bump in the journey. I’ll talk about the bump after the chemo update, but suffice it to say that it rocked me harder than I expected.

Onto the chemo experience. The first cocktail I had was Rituxan, and being me, I had already thrown the doc a curve-ball before the first drop hit my system. You see, standard practice with Rituxan is to have Benadryl standing by, in case the patient has an allergic reaction to it. So what’s the curve-ball?? I’m allergic to Benadryl. 🙂

I am the first patient for my doc in the 12 years Rituxan has been available who has not been able to accept Benadryl in response to an allergic reaction. The doc decided with my respiratory system issues and the number of allergies I do have, it would be best to give me a steroid along with the Rituxan treatment, and she slowed it down initially so she could more closely monitor in case of a reaction. So my treatment was longer than the anticipated 6 hours, but that’s okay by me. I’d rather they went slower to make sure I wouldn’t have a major reaction than to proceed at the normal pace only to have to get the ambulance to carry me next door to the hospital.

I was actually able to do a little work on the WIP while I was having the treatment, but I had to keep taking my headphones out when the doc would come in to check on me, or the chemo nurse, etc. and then I’d get distracted by Facebook (ooh the shiny) or having conversations with people. But progress is progress. I caused the doctor some concern when I was telling Denny (the hubs) that I brought a blanket as recommended because I might get cold, but I was sweating. The doc thought I might be having a reaction to the chemo, but I run hot, and had just plugged in my laptop because the battery was down to about 20% and had both a hot laptop and a hot power supply sitting on me. I told her I could stop the sweating and lifted the laptop in the air. **Magic**

I’m not really sure how the rest of the journey will go, but right now, my laptop is the most important thing to have with me, after something to drink (and I say that grudgingly only because keeping the fluids up should be the most important thing, but—shhhhh, the laptop secretly wins with me every time.)

That was pretty much it… I was the most active of the patients in the room … I kept going walkabout—mainly to use the facilities. I loved listening to the other people in the room as well. Like the lady who was brought in by her sweetheart from junior high … they got married out of high school and had been together ever since. I think she said they had been married for 56 years. And the lady who came to pick up her husband had come to the United States from Japan in 1956 … and her husband says, I think she’s going to stay here…

About the morning bump in the road … it boils down to communication or how we’re dealing with the situation … and the we in this case is my husband and I. He jumped in the shower shortly after we woke up this morning, and I thought he was getting it out of the way while I was trying to choke down something to eat (morning eating has not been kind to me of late). Then he came in and announced he was going into work to resolve some pay problems and ask whether they had anything for him work wise, as he is a rover and hadn’t been fully scheduled for this week. My response was along the lines of You’re leaving??? and then the volatile nature of me kicked in and I said, Fine! Just go!!

Dear husbands, partners, and significant others everywhere – the words Fine. Just go. translated from their subtext mean Buddy, you’d better stick around and explain what kind of crap you just pulled/said, because you have PISSED me OFF! After seventeen years of marriage, my husband still doesn’t understand the subtext, so he left.

I had a brief meltdown. My first for this journey, but I’m sure not my last. While I have gone through this entire process so far pretty prosaically, it rocked me hard to feel abandoned before the first treatment. My thoughts were along the lines of if he can’t even be there for me for the treatments, how am I going to survive the next six months?? I know he’s scared—more than I am, truth be told. Sometimes it is harder being the one not going through the process. And yes, I know he wants to bolt and come back when this is all over, but I was unprepared for how bereft it would make me feel when he did run. Because I fully expected him to run (briefly) at some point, just not this early.

Before you start a hate campaign against him, let me explain why I said the problem here was communication/dealing with the situation. Also he did come and sit with my mom through most of the day, came back and put my slippers on when I needed them, and checked on me throughout the treatment and left a little early to go pick up some medications I hadn’t had a chance to pick up. He left this morning because he had completely blocked out the fact that I was still home because today was my first day of chemo. And I had no idea he had blocked it out because I was still home and preparing to go to my first day of chemo. Remember when I said he is more frightened than I am. That is the truth and he is suppressing all of his emotions to the point that he has turned blinders on about the whole thing.

Before he told me he completely forgot, that idea would have been incomprehensible to me. This is the man who can tell you a baseball stat for the Titans from 2004 without having to pause to think about it. It’s the man who can tell you the anniversary of our first date, first kiss, proposal date, and the list goes on … none of these things can I tell you (I’m lucky to get the anniversary date right—and that has been since the very beginning … I requested time off for the honeymoon for the wrong month.) So the fact that he had suppressed what was about to happen so deeply that he had “forgotten” it, never occurred to me. I know it is possible, and it is not outside the realm of normal when it comes to a huge (negative) life event for someone you care about more than yourself. Your brain blocks it out because you can’t deal with it yet. And he certainly didn’t know he was going to have an issue with it—because his brain blocked it out.

Tomorrow morning I’ll know to remind him about the appointment. And once I post this, I’ll add my list of appointments for the next two months into his phone. Lesson learned: Don’t assume he won’t block things out.

I love the picture at the top of the post because it really symbolizes this day for me. The sun rising (new adventure) over rippling seas (a few bumps, but not too bad) and casting glorious colors to help light our way.

Oh—almost forgot… no nausea yet, and I was able to eat when I got home and am having a nice cup of warm tea. Life is good.

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Nov. 11.

Bravery

TrypticFoxhole

I think it is apropos to post about bravery on Veteran’s Day. I didn’t choose the topic because of the day, but it fits perfectly. I chose to talk about bravery today because I want to talk about a specific aspect and tomorrow will be too late. One comment I have heard from several folks is how brave I’m being. I’m not. And I’d like to explain why I don’t feel as if I am being brave.

Bravery for me has certain criteria associated with it. To be brave, one must be fearful of what they are about to attempt, and the fears must be specific, but the brave do what has to be done anyway. Despite their fears. And for me bravery involves moving forward with eyes wide open, knowing what lies ahead—the horrors that await—and yet still move forward.

In this latest life adventure, I don’t know what is up ahead. I know the road is going to be rough, but the specifics of the experience are yet unknown. And no one can tell me specifically because every person is different. Yes, I can gather some general information and I have been doing so with the limited time I’ve had to prepare. But that doesn’t make me brave. Some might argue that it is brave to face the unknown with courage. Maybe, but I’d argue that we face the unknown every day of our lives … facing it is commonplace, and for me bravery takes something higher.

A small bit of fear exists at the moment, when I stop doing and think for a moment or two too long. Fear about how my body will react to the chemical cocktail its being given. But overall, I don’t think about it. I push those thoughts to the side because they don’t benefit me. Thinking about them will not change the outcome one iota, and I have too many things to get done to let the tiny bit of fear leap out and overwhelm—because that’s what it’ll do if you let it. Why doesn’t that fear count as bravery, since I will go through the process anyway? Because it isn’t specific.

This morning when thinking about this my mind went to the Three Billy Goats Gruff and the bridge they had to cross. The first time you cross the bridge, you don’t know about the dangerous troll under the bridge. You simply step onto the bridge and into the unknown. It doesn’t require bravery. When the troll leaps out and tries to eat you, the only thing you’re thinking about is how do I make it over the bridge alive?? And you somehow do. Aahhhh, but the next time you reach the bridge and need to cross it, you will have to be brave. Why? You know about the troll—it is no longer an unknown factor. You know the danger exists and specifically that someone wants to make you dinner. You have a real, specific fear, and yet you cross the bridge anyway—bravery.

I used the pictures of the soldiers in the foxholes because they exemplify bravery to me. The men and women at the front of battle, going into battle, not just with the fear that something bad might happen, but specific fears from having been battle-tested, and yet serving their country and all of us because it is their duty. My Grandpa was a tail gunner in WWII, and one of the bravest people I have known. Not because he was without fear. He was probably afraid to climb into that plane the first time, but he didn’t know what would happen when flying a real mission vs. a training mission. But he showed his bravery every time he climbed BACK into the plane—knowing bullets would be flying at him, knowing he was likely to lose one or more of his crew. He did it for the pride of serving his nation.

So today, while facing chemotherapy, I am not brave. I will show my bravery the day after tomorrow, when I must go back.

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Nov. 10.

The Change in Diagnosis

© MumblyJoe

© MumblyJoe

I doubt I will posting quite this often once we get into things, but I figured I should probably get this one out while I still had a few minutes before lastminuteitis sets in and I’m running all over the place trying to remember all the stuff I need to get done. Because tomorrow that will be me… without a doubt. The photo sets the right mood. I know the storm is coming in, but way in the distance, there is the glimmer of light and hope. I have my focal point—and you may need to remind me where it is from time to time—but we have a goal and a time when we will cross the finish line.

To answer some of the questions I’ve been fielding from all quarters, no, the change in diagnosis was not a shock. I’ve needed a hair cut and color for several months now, but haven’t had it done. Not because I haven’t had time, but because if I had to go through chemo, then the fewer chemicals on my head, the better. As many of you know, I do dye a portion of my hair pink, but it just didn’t seem like a good idea until I heard the final test results and the words, “no treatment necessary”. So it’s a good thing I didn’t dye my hair. The reason I didn’t was that in the back of my mind I felt as if chemo was a real possibility.

Why did I think I might be going through chemo when all the test results up until Thursday were clear (with the exception of CLL/SLL which I wasn’t going to worry about for several years)? *sigh* Because my fatigue has been too great, I have struggled lately with eating, and I have muscle cramps which are too frequent and too severe to be attributed to CLL early stages only. I have also been bruising from no impact, deep purply-black bruises which look like I’ve been scrubbed on by a toddler with a Magic Marker. These things are not normal. Something was wrong.

In a sense, the diagnosis is somewhat of a relief. If there weren’t these abnormalities running around in my system causing me to feel like a cat dragged backward through a knothole, then I’d have been wondering how much more hellish the next stage would be if THIS was Stage 0. No, I haven’t mentioned much about how I’ve been feeling. I have curtailed my online shenanigans, and I have rested more often than I’m used to. Some days are simply better than others.

Today happened to be one of those better days, after the headache I woke up with went away. I was able to finish setting up this site. I didn’t have to take a nap. I only struggled eating lunch a little bit, and was able to go out to dinner to celebrate our 17th anniversary with my husband (our anniversary was the 9th). Dinner was a good meal. I didn’t choke or feel like the food stopped half way down—and compared to what I have been able to eat, I felt like I actually had a meal. Complete with dessert. It was nice to celebrate without feeling ill.

Today we will call a good day. And for now, it’s enough to keep me focused on the light.

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Nov. 10.

And so it begins…

I found out this past Thursday (11/7/13) that I will need to have chemotherapy and my first treatment cycle begins Tuesday (11/12/13), which doesn’t give me a lot of time to prepare. And that may be a good thing. Less time for my mind to dream up all the possibilities. It forces me to focus.

If you are finding out about my diagnosis from reading this post, my apologies. I tried to contact as many people as I could, but there has been a lot going on and it has been a very short time since I found out I had cancer. I wanted to get this site created so that I have a place to post what is going on with me, because I may not be able to keep you all individually updated—as much as I would want to. How things will go with the chemotherapy is the great unknown for me at the moment, so I also needed a place for you to leave comments for me that I may not be able to accept were you to try to contact me directly. Click the Chats button and leave me a message. And of course, feel free to comment below. I will read them, I just can’t promise when.

A brief synopsis of the past couple months for those who are not aware …. I had not been feeling well and had been to the doctor who drew some blood to confirm his diagnosis. It did, but it also indicated that I was in the very early stages of Chronic Lymphocytic Leukemia (CLL), which is a slow progression non-aggressive cancer … or can be. He contacted the hematologist/oncologist and confirmed the list of tests she would need before seeing me, and the journey started. By the time I saw the oncologist, the CLL diagnosis was 99% confirmed, but the oncologist wanted to run one additional test. The results of the blood flow cytometry confirmed the diagnosis, but also showed that CLL had not invaded alone—it had brought small cell non-Hodgkin’s Lymphoma (SLL) with it. However, I did not have any of the anticipated glandular swelling, so more tests were ordered. I will gloss through those tests at the moment, but suffice it to say that because I had an allergic reaction to the test material, it was a rough week. And finally, the doctor performed a bone marrow biopsy.

The upshot of the situation is that when we finally had all the results from all the tests the CLL/SLL diagnosis was confirmed along with some additional bad guys who have to go. Those of you who know me well know I’m candid about things; however, in this case, for my benefit, I am not going to share what those bad guys are. The doctor specifically requested I not look up the test results on the internet and I don’t need anyone else looking them up and telling me what they are either. I’m sure what she is anxious to avoid is me freaking out over what those findings will be. Though I don’t freak out easily over things like this, it is also NOT helpful at this stage of the game for anyone to mention a predefined life expectancy to me. First of all, it is wrong. The internet has no idea how long I personally will live… the proverbial bus could hit me tomorrow, or I could live to be the cranky old lady down the street. And let me tell you, I plan on being the crankiest old lady you can find. 🙂

Well, that wasn’t so brief… but let me get to the nitty gritty. My treatment plan will be one treatment cycle every four weeks for six cycles. Each treatment cycle will be:

  • Day 1 (Tue) — 6 hours (2 chemo drugs)
  • Day 2 (Wed) — 3 hours (1 chemo drug)
  • Day 3 (Thu) — 3 hours for hydration and white cell boosting.

Just the thought of having to sit in the doctor’s office for 6 hours on the first day makes me tired. My hope for this blog is to keep everyone up to date as frequently as I can. Please don’t freak out if I don’t post daily… I’m simply not that good at daily posting, it doesn’t mean I’m knocking on death’s door. I will be trying to work throughout the chemo, so my reserves may be used up by the end of the work day. Most posts will probably be shorter than this one (can I hear a hallelujah). And once I get my treatment schedule, I’ll post it and make sure it’s visible somewhere on this site, so you will know when I’ve had the treatments. My aim is to share my experiences with you, good, bad, horrid, and laughable. As long as I can keep my sense of humor (most days anyway), I think I’ll come through this with flying colors.

The post picture: I chose the stream because right now I feel a bit like a droplet of water in a river, being drawn forward by a force I cannot see, going to a place unknown, with rocks and branches as obstacles I must hurdle.

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