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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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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It has been a month since I posted about no longer being in remission. I have been reminded how blessed I am to have the friends and family I do. I am touched to know how much support I have — though in many ways this is a solitary journey, I do not take it alone. I am reminded of this on a daily basis. At last update, I was told to stay away from sick people, which can be difficult in an office environment. In fact, the Friday following my appointment, I received a timely reminder as to how difficult it really is. I was generally staying in my somewhat isolated workstation area, but went to the kitchen to make a cup of tea when one of the sales reps walked in to get some coffee. We started chatting and during the course of the conversation, she mentioned she had a cold. I would never have known had she not mentioned it. As it was, I backed up, apologized if I seemed rude and told her I couldn’t be around her.

Fortunately, I had already put the steps into motion to get a note from the doctor to allow me to work from home, and that is where I have been ever since — enjoying life as a hermit. The desk pics you see are my new desk/workstation I have finally put together. I had ordered the desk and it arrived on 8/1, but it wasn’t put together until 8/12. Today was a good day because I finally got a chance to use the standing workstation again. I am used to standing in the office and brought the stand and the monitors from work, along with my keyboard and mouse. In these past few weeks I have learned beyond a shadow of a doubt that I require a standing workstation for the sake of my back. With as much desk work as I do, I cannot sit for that many hours without paying a severe price with my back. The first week was okay, the second painful, and last week excruciating. But a good massage over the weekend and working standing up today and I am doing much, much better.

As for my health, I received a call from the oncologist office to tell me to make an appointment with my GP because my thyroid values were out of whack. I called the office and had them call in the prescription for me, one that I had been able to be off for over a year, and made the appointment. The day before my appointment, an eye infection cropped up, and I was glad it decided to show up before rather than after the appointment. I have also been battling a patch of fungal infection on my leg for the better part of the year, and while I get it to a point where it is not bothersome, it continues to come back, so I asked the doc for some more cream to treat it. The surprise was the spot on my finger was a pre-cancer. It cropped up that very day and we froze it off.

So nothing major, just small inconveniences that have to be dealt with right away so they don’t get out of control. Based on my conversation with the doc, it does seem more likely that I will be headed back to chemo in the next couple months. He received the full report from my oncologist and mentioned that she said she’d have to treat me again. They have not asked me to come back in sooner than October, so I would anticipate either late October or early November. Which is kind of what I anticipated anyway.

So … the worst issue so far has been my back, and tiring sooner than I would like. I take naps daily and my back is already TONS better than it was last week, so all in all I’m good.

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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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EXHAUSTION

By the time I got home yesterday and handled some things for the day job, I had nothing left in the tank. My entire system threatened to revolt if I attempted to get one more thing done, so I did what I should have and went to bed early. But as tired as I was, I still found plenty to be grateful for. The daily ups and downs of life are truly put into perspective when you sit in a room with people who all have the same goal—to keep on living. Yesterday, we were so full in the chemo room, one man had to start his chemo sitting in a regular chair, until one of the other chairs was freed up. And one patient was having chemo in another room because we were so full.

I sat in my chair, thankful exhaustion was the worst of my woes for the day. Others are not so lucky—discussions of hospice and whether continuing chemotherapy will help to prolong life enough or whether it is time to make the patient as comfortable as possible—my heart goes out to those patients and their families for the hard times ahead. And I keep thinking about the guy I sat next to yesterday. He had to use a walker and had a brace on his knee ON TOP of having chemo. I asked him whether he at least had fun banging up his knee. He had been playing basketball when he hurt himself, but if he hadn’t, he wouldn’t know that he has osteosarcoma. Hopefully because he hurt himself, they will have caught it early enough.

Young, fit, your whole life ahead of you, or so you think, until you take a tumble on the basketball court and find out your horizon may not stretch as far as you once thought. Those were the thoughts I saw behind his eyes, as he went through his first chemo session. It’s not what he expected, but it’s something he has to deal with.

We don’t know what tomorrow is going to bring, we don’t know whether the treatment is going to work the way we hope, we can only keep the faith and move forward knowing we’re doing what we can to help our bodies heal. And so for me, I am thankful for exhaustion because things could be worse. I am thankful for my support network. And I’m thankful for the experiences that help me see things from a different perspective.

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After I made the note, I finally drifted off only to be awakened a few hours later by Denny getting out of bed a few times after Phoenix had gone down and scratched at the door to get out. After he put her back in bed the third time, I got up. I know Phoenix—when she gets an idea stuck in her head, she is NOT going to let it rest until she accomplishes whatever mission she is on. When I followed her, she first went over by the dresser and then to the bedroom door, and I realized she was thirsty. When I go to bed early (to read or work from bed), I bring the girls water dish in and set it next to the dresser so they can get a drink if they need one. They need their liquids just as much as we do. And while we didn’t go to be early, she was thirsty. I filled up a glass with water and she slurped away, only to be joined by Elsa as soon as the water was turned on. It had been a warm day.

After we were up at the necessary time, I told Denny she had been thirsty because he slept through the wee hour drink fest. His response? But it wasn’t time for a drink. Like telling that to a dog is going to mean anything at all. Phoenix didn’t care about what time it was … she was thirsty and wanted a drink. End of story.

Another thing that concerned Denny is that I have been snoring during sleep since starting chemo, and he is concerned about what it means and is disturbed because he doesn’t sleep as well. This coming from the man who can wake the dead with his snores. Yes, I am snoring. I have allergic reactions to the chemo drugs, and though we are running the drip at a slower rate so I don’t stop breathing, that doesn’t mean I am free of any reaction whatsoever. It means that the reaction has been reduced to a level that is not life threatening. I am taking my allergy meds—daily, but my sinuses are perennially stuffed, and I snore. This will improve after the chemo stops and I can lose some of the weight I have gained from the chemo, and I’ll no longer be getting the monthly dose of something I’m highly allergic to. I did recommend he go to Walgreen’s and pick up some earplugs.

Sooooo… the actual chemo today. It was delayed. We arrived right on time, and along with the supervising doctor, so all was good … except the delivery of the chemo drugs had been delayed and they didn’t have my cocktail for the day. But it was expected within the hour, so I kicked back and tried to work on some edits. I did accomplish some, but it became clear to me, my level of exhaustion was hindering the process and I wouldn’t be able to focus on the job at hand without at least a power nap. About the time I had this figured out, the cocktail arrived and I was hooked up. I pushed back and took a trip to the land of nod. And like yesterday, didn’t sleep deeply, but at least rested in limbo land and was able to defuzz my brain enough to get some work done. By the time the chemo was finished, so was I. Absolute exhaustion had set in. I didn’t even want anything for lunch. The only thing I wanted to find was my pillow. An hour later, I was ready to start working again. I still have another hour or so of juice left, and then it’ll be (hopefully) time to get a GOOD night’s sleep.

Denny was able to spend the time waiting in the chemo room with me, and I was the only patient through the time I was there. Apparently the only other patients for chemo that day were injection patients. So it was quiet.

Today, I’m just rolling along like the wave in the picture. Wherever the tide takes me.

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On the other hand, I was exhausted. For the first time in any chemo session, I rested for a bit. I was attempting to work on my secret editing project, but knew my brain wasn’t with me, so I kicked back and rested for about an hour… you know the land in between actual wakefulness, and deep sleep where you can hear everything going on around you, but can’t open your eyes??? Yeah, that’s where I was. And after I sat back up and had a little hummus, I was able to focus much more clearly on the task at hand.

We did have a moment this afternoon that caused my chemo nurse some concern—I started coughing. Anyone who knows me well, knows me coughing is not an extraordinary event, but with my white counts being so low, she was concerned I might be coming down with something and wanted to make sure that if it continued after I left, or if my throat became sore, that I would call… regardless of whether the time was midnight or even later. I had been so focused on what I was doing, I hadn’t been paying attention to my surroundings. After all the other patients had left, and Denny had come to pick me up, I let the chemo nurse know what was most likely the cause of my coughing spasm.

One patient I have met before, came into the chemo room with her son to wait for the doctor to be free because she’d had her labs done, but then needed to see the doctor. The son is a heavy smoker, to the point where his pores exude the smell of smoke. Add that together with me being highly allergic to cigarette smoke, and you have a reason for my coughing spasm. I didn’t think about it when I started wheezing. I advise the nurse I was wheezing, took out my inhaler, and took a puff, then continued on with the task at hand. It was only after the chemo nurse questioned me about the coughing that I took stock of my surroundings and realized what was going on.

Funnily enough, they were sitting on the opposite side of the room from me, but that indicates the strength of the reaction. Anyway, the coughing abated after they left, and I’m doing well. Except for now being extremely tired and in search of my pillow.

The picture at the top of the post I thought apt because the mill may be old, but it can still grind exceedingly fine. And I feel a bit like having been run through the mill. Until tomorrow, goodnight.

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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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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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We had a little hiccough in getting started with today’s chemo … two hiccoughs. The first bump occurred with my port. When prepping the port for use, the nurse will first draw blood (and put it back in) to make sure there are no clogs or clots happening. One of the nurses is training to work with the ports because not everyone can work with them. She tried and no blood return. She had the line a little too taut, and the teaching nurse showed her how to do it correctly, but still no blood return. So they shot a little heparin in there and gave me a few minutes and voila, blood return. All in all, no big deal. We’ll see how things go tomorrow.

Interestingly, there was another patient who came in after me, and had the same issue with her port. Her daughter was with her and in her concern kept asking more and more questions about the “blockage”. She was worried, but she was also not allowing her mother to relax, so I quipped that it must be the day for it and explained that my port had the same issue. The daughter laughed and was able to relax after that and her mother finally relaxed as well. Maybe the purpose of my port not behaving was so I could provide perspective for another patient and her family. I was fine and laughing about the little problem so they could relax and gain confidence that the chemo would happen … which it did.

The other hiccough? Dr. Doogie was delayed in his arrival. Why does this matter? Because they cannot start chemo, even the pre-chemo cocktail unless a qualified doctor is there to sign off on it. So I had a couple packets of water going through the line, which gave the nurse a chance to ensure the port was working properly, and we got started a little later than anticipated. But all in all, no big deal on either issue.

Denny was my chauffeur for the day, and since I have chemo at the secondary facility on Wednesday’s under the backup doctor’s overview, there are very few other patients, so he came to the chemo room with me and stayed the full time because the other port-problem patient was the ONLY other patient. This has both good points and bad points. The good? Denny has a chance to feel more involved in the process and that he is there for me. He sees what I’m going through and when I’m calm about things like the blood drawback not working, he doesn’t get all het up and have the questions the other patient’s daughter was expressing—which he would have, had he not been present at the time.

The bad? Oy. I take things with me to do during chemo … otherwise I’d be bored silly, since I can’t seem to sleep, which is what most patients do. Today, I was focused on working on my secret project and making some good headway with it. Before starting on the secret project, I did spend the first hour or so chatting with Denny and the nurses. So I didn’t completely neglect him. When I was ready to work, I put in my headphones, announced I was putting in my headphones, and Denny told the nurse what that meant … I was not to be disturbed. Or as he puts it “I can’t talk to her then.” Here’s the problem … it didn’t stop him from flashing magazines at me and sharing car pictures, etc. For me and interruption to the work is an interruption—whether verbal or non. I was good … I didn’t huff or get angry, I just nodded and went back to work. I would have preferred not to have the interruption.

He is my chauffeur tomorrow as well, but there will likely not be any extra chairs, but I also have covered myself by telling him I’ll bring the Kindle so he can read a book he’s been wanting to read for a while. Any little bit helps.

The picture of the dandelion is two-fold for today. I thought the symbolism of the flower sprouting through decaying wood a metaphor for taking the bad port situation and turning it around for the other patient and her family. The other reason the dandelion is significant is that since not being able to have chemo on my appointed week because my liver enzymes were high, I have been drinking dandelion root tea to help my liver function … and (knock on wood) it is working. Since then, my liver levels have been very good. Dandelions and dandelion root tea is beneficial for more than just the liver as well. Shortly after drinking the tea with positive results, I had a discussion on Facebook with several folks about the benefits, and will link to this article on 11 Health Benefits for additional reading if you’re interested. Briefly, the eleven benefits mentioned are:

• Digestive Aid
• Kidney
• Liver
• Antioxidants
• Cancer
• Diabetes
• High Blood Pressure
• Cholesterol
• Gallbladder
• Inflammation
• Immune System

Ultimately, the tea is good for me to help with my digestive system, liver values, cancer, inflammation, and my immune system (and I’m drinking some while writing this post). I actually notice a difference in my body, water retention/inflammation in particular, especially on chemo days, when I forget, or don’t get around to having a cup. It has been added to my daily routine and I think may continue past the chemo life cycle.

And once again, my friends have proved their worth. Last night, after my marathon day of chemo, I was a little more than fuzzy-headed and question whether I should work or watch a movie. In every single response the result was movie. You guys ROCK!!! And Practical Magic was just the ticket for me. Tonight the muzziness is not too bad, but I came home and took a nap after having some lunch. And now… on to the ice cream Denny brought home tonight after picking up my meds for me. (Oh and sorry about the screen shot below, I wanted to embed the FB status, but FB says it no longer exists… funny how I can take a screen shot of something that doesn’t exist, eh?

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Today what my body has been through in the last week caught up with me. Tired, headache I can’t seem to get rid of, and I’m retaining water like a camel. So I took it slow and easy this morning. I had an appointment with the surgeon for the port recheck today at 11:30, so I geared my morning toward prepping for that. My only problem with the recheck was finding the doctor’s office.

Once again, I didn’t get a confirmation call… and if I had, things might have gone a lot smoother because I might have questioned them when they told me to go to an office I’d never heard of. Not even thinking twice about it, I hopped in the car and went to the office I know… to be told when I walked in the door that I was at the wrong location. The receptionist handed me a card with the address, a place MUCH closer to my house, and off I went. Good thing I was early for the appointment at the wrong place, eh? I arrived at the “new” location and couldn’t find the suite on the card, so popped into the Urgent Care facility on the ground floor and asked. The receptionist there looked at me like I had two heads. So I asked for the doctor… OHHHH despite having 101 as the suite number on the card, he was upstairs… they didn’t tell me what suite, but gave me lousy directions “just up the stairs”.

By this time, my temper was frayed. The headache I had been trying to outrun came on full force, and I was NOT a happy camper. This is one of those times where I know my anger was disproportionate to the situation, but I also couldn’t change things. (Don’t worry, I didn’t behead anyone… I just kept stating over and over that I was NOT happy.) Fortunately, everything is good with the port, and I don’t have to go back unless there is a problem with it. And the drive home was short after having driven half the county earlier.

Knowing I wasn’t fit for any interactions with people, when I got home, I took a nap, hoping the headache would go away. No such luck. Of course, I’m way behind on getting fluids into me because I haven’t figured out how to sleep and drink at the same time. Pushing the fluids will ultimately help the head situation. I did ice it, so the edge has been dimmed, but still suffering with it. I am now drinking tea, and will try a little food before nausea kicks in, but I do have to say today has not been one of my favorites. I really could have done without the extra driving and the headache can leave any time.

The picture shows how I feel… being beaten by the forces of nature at the moment.

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

**Sets off sparkly confetti cannon**

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

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

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