Author Archives: Liana Gardner

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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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. πŸ™‚

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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. πŸ˜‰

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. πŸ™‚

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 πŸ˜€

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. πŸ™‚ )

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. πŸ™‚ 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 πŸ˜€

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. πŸ™‚

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. πŸ™‚

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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