Category Archives:Musings

Feb. 23.

Infusion Day

Now that I’m a hair less exhausted and might be able to construct a legible sentence or two, I thought I’d share how my infusion day went. Because of the length of time the treatment takes, I have to be to the doctor’s office by 8:30 AM which means leaving the house around 7:30 … just in case I run into traffic. I had prepared better for the day, since I knew it would be closer to 8 hours than 5-6, I brought some things to nibble on as well as things to drink. The chemo nurse who had been there the last time wasn’t there, but the nurse who usually takes care of me was running the chemo room, so all was good. She got me all hooked up and tested the port, but then nothing was going in. It took a bit of finessing, but she got it going and then came the first question of the day.

As I am allergic to Benadryl, they give me a steroid instead to help minimize the allergic reactions … and I do need it. The problem was that the preceding treatment, the chemo nurse charted that she had given me 10mg and I know my doctor had given instructions for 4mg. I recalled the conversation verbatim, and the doctor agreed that is what she had said, but we didn’t know whether the chart had been incorrectly marked or whether I had been given the 10mg vs. the ordered 4mg. (The chemo nurse is no longer with my oncologist, and it’s probably a good thing if she cannot follow what the doctor orders.) So we decided to proceed with the 4mg. That settled, I pulled out my laptop, settled back in the chair, and started working on some things.

I always bring stuff to work on while I’m there because I don’t sleep easily or well in that type of environment and can’t sit there and stare at the walls doing nothing. So I have my laptop and can work on whatever I have the brain power for (which this time around wasn’t much). I also can hop on the internet and do some surfing or watch a movie, as I usually bring one along. The morning went by quickly and then it happened. I made the BIG mistake of invoking Murphy’s law by making the following statement: “Wow, it’s going fast today.” I said it after the second bottle had completed, so should have been half way done and I had hopes of being done early. Murhpy just gave a huge evil belly laugh and said, “Not so fast.”

With the third bottle hooked in, I figured it would be a good time to watch the movie I had brought with me because I really was too tired to do much else. So I popped in Spy and began watching. I had seen Spy before and thought it would be a nice, light-hearted watch. I enjoy Melissa McCarthy and though the film itself is on the spoof/ridiculous side figured it might not be quite as funny the second time round, but still something to take me away. Boy, was I wrong. I had forgotten to factor in my state of exhaustion, so it was like watching the movie after a few too many drinks. It was hysterical. I nearly snort-sprayed my monitor on lines I KNEW were coming up. And it was difficult to keep from laughing out loud (I didn’t want to wake anyone who was napping by cackling away.) I could not have made a more perfect selection for the day. Anyway, if you’re utterly exhausted and want to watch something for giggles, I’d certainly recommend it.

Somewhere toward the end of the movie, I noticed that my drip wasn’t doing it’s thing and dripping. It was still working, but going extremely slow. I didn’t think we’d ever get that bottle done with. So, instead of being on the fast track, I was going to be done later than usual. By the time all was said and done, it was after 6PM before I left the doctor’s office. Then I had to swing by the pharmacy to drop off a prescription for some sleep assistance. I haven’t been sleeping well at all of late. An hour at a stretch, with a lot of wakeful time in between, so it was time to get some help.

I arrived home more than 12 hours after I had left, just in time to take my chemo. And by the time I did get home, I noticed something. My left wrist felt almost completely numb, as if it had been broken, and both ankles were going numb. Definitely an allergic reaction. And then it clicked … earlier I had been extremely antsy and couldn’t stay seated in the chair, which does happen with me from time to time, so I didn’t think anything about it, but realized, it was a precursor to the swelling happening by the time I arrived home.

Knowing what was happening, I was able to get things under control quickly, but I think it answered the question of what dosage of the steroid the chemo nurse had given me the last time. So, my next visit, the doc and I will have a chat about how to best handle the amount.

The picture of Mount St. Helens is a reminder for me that even after devastation, the tenacity of life can conquer.

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Feb. 21.

Beware of the Sypot

First off a warning to the reader: this post is likely to be riddled with sypot of all kinds — misspelled words, missing words, or maybe a sentence or two that makes absolutely no sense. I am making no apology for how you find this post, it is as I am writing it and will probably not go back when I can see much more clearly than I can now to changfe things. Some of you may think, Aren’t you a writer? Shouldn’t you correctr everyting yoj have in writing? My answer = No. And here’s why.

When I started this blog, I promised to be as real as I could with it in sharing my journey along way. One of the things I have talked about the most is the fatigue that comes with not only the cancer itself, but with the cure. And right now I’m in the Bermuda Triangle of Fatigue coupled with the Catch-22 of not sleeping well. FATIGUE is the most common problem cancer fighters face, no matter hwat your version of the illness, there is this big dude named Fatigue waiting in a dark corner to club you with his baseball bat and knock you to your knees.

As a person with leukemia, the question I hear all the time from everyone around is is How are you feeling? or the statement I hope you are well. Please don’t miunserstand the following … I love that I have so MANY people in my life that CARE enough about me to ask how I am. I honestly do. BUT, it is also the question I have no happy answer for. Right now, there is not a circumstance wihen that question will have an ansswer of Great!! and I know the asker is not expecting that. If I say I’m fine … I’m lying. I am not fine. I have leyukemia and lymphoma and I am taking chemo to help get them back under control and I am now going for an infusion to boost the immune system which should win the academy award for best portrayal of playing dead. When I say I’m okay, take that as the best possible answer I can provide at the moment without lying to anyone. But most of the time, if I’m not lying … and I don’t like to do that to questions genuinely asked, the true and honest answer is going to be, I’m tired. Or I will simply avoid answering the question.

There are only so many times you can say, I’m tired or I’m fatigued or This day is kicking my butt before you feel like a Grade A, Number 1, First Class WHINER. I try to keep things positive most of the time, because I NEED TO. It’s not because I want to come off as little Mary Sunshine adorning everyone’s days with rays of light and rainbows, though I do try to spread happiness and love as I can. But I need to harness the power of the positive to help me defeat this beast trying to take me down. So when pretty much every day I am asekd to answer a question where there is a negative response waitingm, it does tkae me down a notch.

Normally, I don’t care what other people thingk about me. Primarily because it is their perception and feeling and the only thing I can do to sway them one way or the other is to continue being me. But in this case, when the words tired and fatigue are used so frequently, you begin to wonder whether people’s perception of you is changing through no fault of your own. DO THEY consider you a whiner for always being tired? But then I started to wonder whether a better understanding of what is meant by fatigue would help create common understanding for those who have not experienced this level of fatigue. So today, in this post, I’m NOT TELLING you I’m tired, I’m SHOWING you HOW tired I am. I have a form of dyslexia that is much harder to control when I am tired. Most of the time, when “Normal“, when letters arrange themselves in my brain in the wrong order by the time the command hits the fintgers typing the characters, the rearrangement of the owrd has taken place or I immediatelly catch on typeing and correct. Not this time. My brain is somewhat scrambled and the orders it thinks it is goving are not recived correctly by the fingers and mistakes are made. Frequently.

Big deal, right? Wrong. Those who know my nearly obsessive attention to detail when it comes to writing can confirm how much errors normally upsets me. Me On Fatigue = Scrambled Brain (breakfast anyone?) Thius manifests iteslf not only in writing but in speech as well. My entire language center can go on the fritz and sometimes it is really bad. Tonight, as I arrived home from my infusion (actually dropping off a prescription at the pharmacy, but I’ll get to that in a moment) I stard blankly into the car as I tried to remember what I had done with the credit card after the pharmacy clerk had returned it. Then I became confused becauyse I couldn’t remember giving it to her. Then FINALLY realization dawned: I hadn’t given her the credit card becayse the ONLY thinkg I was doing was DROPPING OFF the prescription. Now imagine that about every activity you do throughoyut your day. This truly illustrated a moment of the brain on fatigue. I was getting ready to tear the car aaprt when I remembered about only dropping it off. I DID however search for the excuse note I had drafted for the jury duty summons I have received, as I will not be able to appear. I rmemebered to ask about it (YAY!!! foir me) I remembered to remind the chemo nurse that I needed it. I helped her write it. And then I’m pretty sure I left it on the counter after having input my next appointments into my phone. Brain on Fatigue Fatigue means I can’t think straigh, I can’t write straight, I can’t speak straight, my emotions are a jumble and are raw and right next to the surface. It is easy to make me cry, and easier to piss me off. The good news is that, as always, it is easy to make me smile and laugh as well. More things are funny and more things are terrible. The brakes have come off, all filters have been dissolved, and life feels very much like something you’ll never have control over, even as an illusion, again.

So … after all that? How am I? I’m Tired. I’m Exhausted. I’m Fatigued/. And I very much open that you’ll not think less of me for feeling this way. It is honestly where I am. And hoepfully as well, you can understand how being reminded of such becomes a negative. Because the other thing I am (as in How am I) is De3aling. I am dealing with the cancer, dealing with the cures, dealing with the ftigyue, dealing with the isolation, dealing with my workload, dealing with not sleeping, or sleeping too much, dealing with getting ill and nto haveing anything to fight with … all of it in the ONLY way I know how.

One. Step. At. A. Time.

The picture at the top of the post is one I selected to show the tenacity of my hope; the tenacity of my faith. Tomorrow the sun is going to rise, and tomorrow, I am going to be here to see ti. Mabye not as it rises, but I will know on waking each day (presuming I have actually sletp) anothe r day has dawned. And the picture of the lantern is something in the chemo room the nurses clubbed together to buy as a decoration for the room for the patients. To remind us that through Love and Caring, Faith Makes All Things Possible.

***Note – In the body of this post when I typed what I had intended to be the word typos and it came out sypot, I laughed and couldn’t help but use it for the Subject of this post. So yes, the post Title misspelling was deliberate. Everyuthing else you have suffered through in this post comes from the very addled brain of yours truly./

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Jan. 30.

Unexpected Infusion

I am getting to this post a little late because things happened fairly quickly and I have been on the tired side of late — kind of like the kitten passed out in the picture. After my latest cold, which took a few weeks to get rid of, I went back on my chemo treatment and when I went to the oncologist, while my leukemia values had improved, my immune system values had not, so she decided to move forward with a treatment to boost my immune system. Remember how happy I was to be skipping the chemo chair this time around? Well, I will now be going for a monthly infusion to help my immune system rally so I am not so prone to getting ill. Eight hours and four bottles worth once a month.

But I will continue to do as I did before … Bring things to work on, bring movies to watch, and basically keep occupied during the process. Rather than be upset that I have another hurdle to go through, I am choosing to be happy because this will help me get well. And if I respond as well to this treatment as I am to the chemo, then I’ll be back to normal in no time at all. And I was absolutely delighted when they hooked up the port and it worked beautifully and didn’t even require flushing. I wasn’t sure whether the port would need to be cleared out or not because it has been nearly 3 years since its last use.

The biggest issue, per usual, was being allergic to Benadryl. My oncologist always gets nervous when starting a new treatment because part of the standard protocol she uses is to give allergy medication in advance of the treatment to minimize the potential for allergic reactions. And I am allergic to so many things … Then came the question as to whether we would use the steroid as we had with the treatment 2013/2014 instead of Benadryl. Slight problem, there were contraindications for the steroid with the chemo. Except because of what the contraindicators were, we decided to go ahead and use the steroids. I’m glad we did because I would have had an allergic reaction.

The biggest issues encountered with this infusion were increased fatigue levels and some joint pain. Fortunately, the joint pain has been manageable, and I have rested more this past week, hence my not posting this immediately. I finally caught up on rest yesterday and am not feeling as fatigued today. I will find out the results of the infusion and how the chemo is going tomorrow … so stay tuned. 🙂

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Oct. 12.

Searching for the Rainbow

Lightning and Rainbow

Lightning and Rainbow

Yesterday I had my three month check up with the oncologist. I don’t mind admitting that the past three months have been difficult ones for me as I do NOT wait well. The BIG question for the visit was whether the blood values had started behaving themselves or whether they either maintained or became worse, which means the watchful waiting would change from watching to chemo. Based on the way I have been feeling and my increased fatigue levels, I knew the results would be worse, and my anticipation was that we would discuss when to do the bone marrow biopsy and when to start chemo again. For the first time, I have approached the blood-value checking without knowing what I hoped for.

Let me explain. Barring divine intervention, I knew I would not be walking in to find that my values had all returned to the normal range. With the way I have been feeling, even had God made that happen, I’d have probably dissolved into a puddle of tears because the truth is I don’t feel well — I’m not 100% and I know it. And if everything was normal then there was something seriously wrong. So what were the possible outcomes of the visit? The expected march forward toward chemo, which is not something to be greeted with glee … or to my mind, even worse, sentenced to waiting another three months because the values remained steady.

Soooo, the results were worse, and not just a little worse. The progression continues to be aggressive and the values jumped as much as they did between April and July. What did I feel on hearing the results? Validated. My energy levels have been extremely low and at least there is a cause I can point to … other than feeling like a slug. But here is where things went off course from expectation. Instead of hearing bone marrow biopsy and chemo, I heard come back in January. Ummm, my blood levels are as bad or worse than they were when I went through chemo in 2013, so I didn’t understand why we would continue to wait.

But here’s the thing, while my white blood cells and lymphocytes are clogging up my system, my platelets are fighting the good fight and refusing to be beaten back. They are still within normal range. And BECAUSE they are still hanging tough, the doctor wants to give them the opportunity to continue their fight … so we wait and check again in January. Did I see this as a positive? NO! Why not? Because my mind doesn’t deal well with feeling like I’m in limbo. I know I’m not well, so I want to move forward and FIX the problem. As unpleasant as moving forward can be sometimes, it is taking action, and I am GREAT at putting one foot in front of the other and powering through. No matter what.

My dear friend, Italia, helped me get back on track emotionally with a lesson in gratitude. I was seeing the storm and the lightning strike and feeling like things were just going to continue in limbo, and that I truly don’t want to spend the rest of my life like a hermit. I need time-based boundaries … because I can do ANYTHING for XXX amount of time, as long as I know. Doing things for ??? amount of time, I don’t do well. So I saw the storm and the lightning was the jolt that said, you don’t have any control here and you’re just going to have to wait. Italia tapped me on the shoulder and pointed at the rainbow — the positives in the situation like: not having to be in chemo through the holidays, giving the medication my doctor prescribed to help with the fatigue a chance to work so I felt better and more ready to face chemo, being able to continue working from home to help me stay as healthy as possible. She reminded me that God is in control and I was focused on my picture of what I wanted and not on the bigger picture He has for my life.

This is WHY we have friends. 😀 To help us look for the right things. Normally, I am always searching for the rainbow, the bright spot in the storm. But all I saw were the gathering clouds and the destruction caused by the lightning. Does seeing the rainbow make things easier? A little. I am still dragging tail and feel like some thief came in and stole all my spoons while I napped, but I have my little ball of hope back, and with that alone I can conquer the world.

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Jul. 13.

Bye Bye Remission

Miriadna - Far Cry

Miriadna – Far Cry

It has been 3 months since my last blog post. I feel like I’m starting a confessional. 😉 As you might tell from the title of this post, I am no longer in remission. The slightly elevated lymphocyte count decided to go on a bender and became a definitely elevated lymphocyte count. The little buggers decided to more than double over the past 3 months. Which is not exactly the results we wanted from this visit and we are still in wait and see mode.

unsinkablemollybrownA few weeks ago, a good friend said I reminded him of Molly Brown … the UNSINKABLE Molly Brown. I was honored by his comparison. Molly was a childhood hero of mine. No matter what happened, Molly fought and scratched and managed to survive and succeed against the odds. She survived the sinking of the Titanic and fought to do the right thing and go back to save more people who were in the water close to the Titanic as it sank. I have always identified with Molly, I wanted to be the type of person she was, always striving to be better, concerned and caring toward her fellow man, dusting herself off when she met with a setback and striding forward again. She had the will to succeed. The will to survive.

So do I.

While this news is not exactly welcome, it is also not the end of the world. I AM a survivor and will continue to keep my focus on eating the right foods, exercising, and getting enough rest. It’s the only thing, outside of prayer, I can do to help effect any change in my body. The results were not a surprise to me. I have not been feeling 100% for a while now. And certain of the small symptoms have been creeping back in, like:

  • Easy bruising
  • Small blood vessel bursting to create blood blisters
  • Higher fatigue levels
  • And the dreaded night sweats have become worse

All of these things were a precursor to my diagnosis in the first place, so as they have been increasing I have had a sinking feeling that my counts were getting out of whack. But other than that, I feel okay. And for today, okay will do fine.

What comes next? Well, we are still monitoring the development, so I go back in another 3 months and we do this all over again. The only changes I need to make are to make sure I exercise additional caution with regards to being around people. My doc has told me to stay away from sick people again, since my ability to fight off infection is once again compromised. So limiting exposure to crowds, making sure I don’t get exposed if someone comes into the office with a cold, if I see someone hacking and sneezing … run the other way. In other words, stay as healthy as I can.

What can you do??? Say some prayers, or send good juju to the Universe, and join me in thinking positive thoughts because I have way too much to accomplish to succumb to failings on the part of my body. 😉

The mountains at the top of this post are to remind me that I scale mountains every day and the only way to get to the peak is to keep climbing, no matter how many times you slip and fall. If you fall, you get up, clean off the scrapes, ignore the bruises, and continue moving forward.

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Apr. 12.

Change in Values

It has been awhile since I updated this blog … and for good reason — there hasn’t been anything to say. Two years ago, April 10th, I had my last chemo treatment. File that under “WOW, Time flies!!” Today, I had my quarterly blood-letting to check to see how things are going. In some respects, those two years have passed like I only blinked my eyes, but in others, I realize how much I have accomplished and how my life has changed … for the better. Throughout it all, my doctor has been thrilled with my blood values, as they have been smack dab in the middle of the normal range. That changed today.

Today my visit brought a bit of news. My lymphocyte count is no longer in the normal range; it has crossed the line into the “high” territory. At this juncture, the doctor is adopting a wait and see attitude because I have recently been sick, and that could be the cause of the elevated lymphocyte count. We discussed testing, but since the tests she would run at this time were negative when my system was 50% compromised, we decided against doing any tests. And I swear, any more radiation tests and I’ll start glowing like a Christmas bulb.

What does wait and see mean? I put renewed focus on my health — eating the right foods, exercising more, and making sure I get enough rest — and in July we look at my blood values again. From there … who knows? I am not going to speculate. In fact, I’m going to keep on moving forward with my life, focused on the wonderful things I’m involved with, and figure this is a blip on the radar caused by the recent bout of bronchitis.

I liked this picture of clouds because even though they’re dark and night is falling, they are still lit by the sun and their radiance is beautiful.

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Mar. 20.

The Eyes Have it

I can’t believe it’s Thursday all ready. Did someone put this week on fast forward? I swear I was going to post this on Monday … but life kinda has a way of happening and getting in the way of good intentions. First things first—my blood counts are doing well. The doc is super pleased with how stable my hemoglobin and platelet counts are, and the white counts have skyrocketed, which means the injection to boost them is working. They will fall over the course of the next three weeks, so I’ll keep you posted.

I have had a little bit of a setback this week, however, unrelated to the leukemia & lymphoma. Monday was the day for what I THOUGHT was supposed to be my last shot in the eye. I was more than a little discouraged to be told during my appointment that I would probably need to have a booster shot two or three times a year. I think I’m going to have my doctor refer me to someone else for a second opinion. The reason I went to the retinologist in the first place was that I have some splotches near the center of my vision and I can’t see through them. The shots are to treat the edema in my right eye, and have done nothing for the splotches, AND the edema has worsened through the treatments. I’m not saying I think the shots have made me worse. Perhaps things would have been much more severe had I not started the treatments when I did, but as things stand, I want someone else to take a look.

On top of my disappointment at learning I’d have to continue having more shots, my eye is a mess. This time the redness is visible and yesterday I had to go back to the doctor because the eye was matted and sore. They believe I’m having an allergic reaction to the iodine used to sterilize the eye. Next time they’ll wash the iodine out after the shot has been given. Seriously???? I have five treatments with no adverse effects, but shot number six and my eye decides to have an allergic reaction??? It is still sore, and has to be cleaned a few times a day, but putting drops in helps and I think it might be feeling a bit better overall.

My energy levels have been a bit better this week, but wouldn’t you know I’d have the eye thing… when your eyelid feels heavy it makes you feel tired, or at least it does me. I’ve been taking lunch time naps when possible, aided by my two furry companions, Phoenix and Elsa. The girls are always ready when it’s time to take a nap, and Elsa is my trusty nap barometer. Actually, at night when it’s time for me to go to bed, she’ll come get me, even if I don’t think it’s time for sleep. She’s very persistent. And she assesses the degree of napping need. If I just need a little power nap, she’ll curl beside me. When she’s serious about me getting some good down time, she’ll lie across my midsection, and when she crawls into my arms, and snuggles her head under my chin, it means there WILL be some serious nappage going on. 😀

Other than having the stupid eye thing going on, things have been pretty normal … as normal as things can be right now. Although I do have days, like today, where my energy seems to be taking a dip. So when that happens, I have to listen and try to get a little more rest.

The picture at the top in in homage to the eye. It looks something like that.

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Mar. 10.

Will She … Or Won’t She…

Still trekking through forest, with the promise of a clearing ahead. Tomorrow begins chemo cycle 5—with a bit of luck.

Today I had my labs, and my white counts continue to drop … not excessively, but enough to make me under the doctor’s cut off point. No shot was given because they wanted to run the values by the doctor. Since I will receive the shot to boost my white counts on Thursday, the nurse thought it likely that the doctor would choose to wait. The values are not dropping fast enough to cause alarm, but they definitely need to be watched.

I have also slacked off on drinking the dandelion tea on a daily basis and it showed up in my liver function values. *crosses fingers* Hopefully the values will not have raised to the point where I cannot have chemo tomorrow. So if the liver values are too high, then I’ll be sent home after getting a shot to boost up my white count which is too low. Figures my body can’t decide which way it wants to be.

After giving me the CBC results, the nurse told me to get some rest. And I’ll try, but it doesn’t always work out the way I’d hoped. For one thing, the “spring forward” time change always messes with my ability to sleep. I try to adjust my sleep hours, but what usually happens is I end up staring at the ceiling and getting far less rest than I would have had we simply left time alone for a change.

Tomorrow will be an early day, so I’d best get back to my edits so I can at least try to get some sleep. Wish me luck on being able to move forward with chemo.

PS – the low white counts mean continued isolation. Can’t risk being exposed to the sniffles at this point.

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Mar. 03.

Fatigue Mystery Solved

Last week I talked about how tired I’ve been … well, today I found out why. I’ve been feeling more sluggish than a tree sloth, and it turns out my white blood cell counts are down. I went for my lab work today, just as I do every Monday, and while I didn’t have to have a supplemental shot, I gather it was a close run thing. The nurse said the white count was borderline, while the platelets were good, and the hemoglobin is holding steady. This is the lowest the white cell counts have been since receiving the initial chemo leukemia diagnosis in July. Despite the fatigue, I’m viewing this as good news. It means the chemo is doing something, the bad white cells are being obliterated, which is the whole point of the exercise.

I feel a bit like the squirrel in the picture. I’ve made it to the end of the path, and I’m just too tired to go another inch. I should be bouncing off the end, diving into my future, and all I want to do is curl up and take a nap. Those who know me well, know slow down and take it easy are barely in my realm of understanding. I do take time to reflect, but it is always with a purpose in mind. I’ll just have to remind myself there is a purpose here too: to give my body the resources it needs to fight. I want to be working on my new book, and I am making some small steps forward, but right now rest is more important. And that is a very hard thing to get through my head.

And as a bonus to you, my posts are much shorter when I’m tired. 😉

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Feb. 28.

Fatigued

Yawn! That pretty much sums up this week for me. I’ve been tired every single day. This should have been the week my energy came bouncing back, but instead of bouncing, it hit the floor and played dead. Every day has left me bleary-eyed by 5 PM, and that’s with taking a lunchtime nap during the work day.

I realized a few days ago that I had been so tired I forgot to have my dandelion tea, which is probably why I’m still retaining excess water. I don’t know if it’s the changing weather or just that the chemo is hitting me harder this month … but I do know, I don’t like feeling this tired. I want to crawl into the castle in the picture and sleep for about a month. And at the same time, I want to get things accomplished. Not once in my entire life have I ever accomplished more than dreams and ideas while sleeping. Which by the way, I don’t want to give up the dreams and ideas, they help fuel my writing.

Not to go on and on whining about my tiredness, I have had some bright spots to my week. Even late this afternoon as my energy level was plunging, I figured out a possible solution for something in the day job, so I’ll be ready to tackle it and see whether I can make it a reality on Monday. I’ve been doing some research for my newest story and found out some important information about my main character this week. And, of course, the brightest spot to the week was signing with Italia Gandolfo of Gandolfo Helin Literary Management.

Other than being plum tuckered, I’m doing well. My blood values remain good, and I’m feeling well—except for the fatigue. Yesterday and today have been marginally better energy-wise, but tonight I may just lean back and stare at the ceiling for a while (otherwise known as pre-plotting) 😀 .

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Feb. 04.

My Feeble Update

Niederaichbach, Bavaria

Niederaichbach, Bavaria

There’s something you should know about me—I’m a terrible blogger. When I have something to say, I sometimes manage to get it blogged, but more often than not, I’m working on other things and those great pearls of wisdom I was going to impart will have to wait. But when I have been nudged by multiple friends all asking how I’m doing, and the ENTIRE purpose of this blog is to keep everyone updated, then it’s time to sit down and focus on letting you know.

I’m doing well. No complaints. Blood work is good. And cycle 4 is looming on the horizon.

Why haven’t I shared those earth-shattering tidbits with you??? Because I’ve been busy. I have managed to finish the edits on the 4th book in the Misfit McCabe series. I’m researching my next book. It’s a book that excites me in many ways and I’ve been trying to clear the decks to get to it for the past 4 years, so my focus is on getting the research done so I can FINALLY get to the writing on this one. I also have a few other projects in the works … none of which I can talk about.

As you can see, since there is nothing ruffling my calm on the health front, and being so focused on things I’d rather be spending my time and energy on, remembering to do these updates has taken a back seat. When I am focused on writing projects, everything else tends to fade away. 🙂

The picture was perfect for this post because it has sunshine and blue skies reflected in calm waters… and that is where I’m at right now.

PS—When I have something important to let you know or my condition changes, the first thing I think about is blogging it to keep you all up to date. xoxoxo

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Dec. 21.

Life Beyond Normal

ChristmasBells

My Status: Headache ascendant
Mood: Philosophical

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

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

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

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

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

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

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

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Dec. 11.

A Difference in Perspective

My Status: Improving
Mood: Appeased

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

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

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

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

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

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

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Dec. 09.

Chemo Eve

Christmas by Lyanne85

Christmas by Lyanne85

My Status: Tired
Mood: Content

That’s right, it’s Chemo Eve. I will NOT be breaking out the champagne for this one. Somehow the thought of going tomorrow to sit in a chair for six hours while various drugs are dripped into my system just doesn’t fill me with the party attitude. But that’s okay. Not everything in life is a party, nor should it be. I appreciate the journey I’ve had so far with the chemo because overall the reactions have been light. Will they continue to be?

*shrugs* Tomorrow will tell.

Tomorrow is my 6 hour day, and I have my snacks ready, thermos waiting to be filled with tea, so I have something warm to drink throughout the day, slippers, movies to play on my laptop, a big red, fleece blanket, and a driver who will most likely be on time. I feel like I’m off to camp. Camp Chemo—the camp where everyone has their own drip bag, and the games are lame, but the grand prize for camp completion is the coveted remission.

So while I’m not necessarily looking forward to the next three days, by the end of the week I will have notched the second cycle of six on the chemo tree, and will be one-third of the way through my treatment … which sounds a heckuva lot better than 16% of the way there. It’s the equivalent of eating liver when I was a kid. I would never have requested that we have liver for dinner, it was not, and remains not one of my favorites, but when it was served, we had to eat it. I learned the trick early on of making sure I had a mountain of mashed potatoes to bury it with, and I’d take a heaping portion of the grilled onions, too. Every bite had to have mashed potato and onion with it, and ultimately I’d finish the liver first, and then enjoy my last few bites of mashed potatoes as my reward. So while chemo was definitely not on my list of things to start in 2013, better health and being well will be my reward for persevering.

While I did rest a lot over the weekend, today I was tired for most of the day. I blame the weather. We had nice sunshine, but winds caused my allergies to flare up and my sinuses to go haywire, so I’m not as rested feeling as I had hoped to be. And the leukemia has been kicking up, because even though the temps were at 46F, I was sweating while sitting still. I did manage to accomplish what I needed to for the day job today so that was a positive. I don’t like going off with things left undone to fester while waiting for me to return. And tonight, I’m a little less tired because I had a great conversation with a fellow writer, and that always energizes me.

Until tomorrow. Good night.

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Dec. 06.

Crankiness and Hope

Christmas by Ironii

Christmas by Ironii

My Status: Feeling Better
Mood: Irritated

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

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

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

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

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

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Dec. 03.

Heeeey, Blepharitis

My Status: Are you kidding me???
Mood: Cheerful 😀

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

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

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

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

Bleh!

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

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

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

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

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

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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. 😀

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. 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. 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. 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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