For two years, I was on a targeted therapy drug, and it did its job. My blood values were beautiful and stable. But while it kept the cancer in check, my doctor wasn’t happy with the thought of my staying on medication for the rest of my life. So toward the end of last year we made the decision that come January 2019 I would stop taking the medication and we would see how I did.
Apparently because I can never do anything the easy way, come the beginning of January, I contracted scarlet fever and wound up in the hospital — the same week I was to see the doctor and come off the medication. Well, with the particular medication I was on, the first thing that happens when you get sick, is you stop taking the mediciation. But I was going to stop the medication anyway, so no biggie right? I just had to do it with a little dramatic flair (which I could have done without).
Come May, my values had already creeped outside the normal range. So we went into “watchful waiting” mode. No need to take action, but close monitoring was required. In July my white counts had jumped up, but were still just under where we needed to take action. Between the July appointment and now, I knew my values were going further and further out of whack. Primarily because my fatigue levels have significantly increased.
I had an appointment with the oncologist this week and sure enough, it’s time to take action. The decision was to try another protocol than the targeted therapy drug, as the doctor was not happy that the “remission” only lasted a brief 5 months. She would like to try something to hopefully give me years in remission rather than months.
I still don’t know exactly what the protocol will be, but I do know it will involve full-blown infusion chemo drips. While NO ONE gets excited about having to go through this process, I am focused on the trade-off. Six months (most likely) of treatments now, so I can have some chemo-free years. The treatments will probably start in the next week or two, so I thought I’d dust off my site so I can post updates as to how things are going.
Like last time, I’m sure there will be decent days, and dreadful days, but I am going to get through it all in the best way possible.
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.
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./
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. 🙂
I am at the one week mark for taking the chemo and so far, I have been doing pretty well. Minimal side effects from the chemo … barring one possible exception. I have a head cold.
Last Thursday I saw my orthopedist because I had some fluid on the knee and my doctor wanted an X-ray. Unfortunately, the X-ray technician had an emergency which was far more important than my knee, so the orthopedist gave me a shot to help minimize the pain and sent me on my way with an appointment for tomorrow to have the X-ray. That night I started feeling a bit stuffy, but since our weather has been up and down like a yo-yo, I thought it might be that as well. But as I thought I might have picked up some sort of bug while in the waiting room, despite wearing two surgical masks for protection, I took preventive measures. Things started clearing and two days ago, I thought I had it licked.
Not the case. Yesterday, it fully bloomed and I have a head full of snot, a frog for a voice, and have sneezed more in the past two days that I usually do in six months. I called my oncologist to let her know the situation and have also talked with the pharmacist for my chemo meds. The oncologist told me to stop taking the medication today and tomorrow and to call her before taking on Friday. We’re trying to get me cleared up.
Why would she have me stop the chemo? Well, one of the side affects of this particular chemo is the potential for getting colds. So my already bad immune system is made a little worse by the medication I’m taking to help my bad immune system. Or it feels that way at any rate. I am sure this is just a little blip on my road to kicking cancer’s butt; however, we do have to take the right precautions and not allow the cold to get out of control.
I always feel a little silly calling a doctor because my head is stuffed up and I have a runny nose because colds happen and just have to run their course, right? Except in my case, now, we cannot allow the small things to get out of control. I don’t have any resources to fight off anything on my own. So what normally is something that makes me feel lousy, but I usually just power through, has me in bed and is keeping me there to give my body the best possible chance of fighting this thing off before any infection develops.
The picture at the top is how my head feels. All foggy and sluggish, and somewhat murky. Things will get better. But for now I must rest.
When I saw the oncologist last week we didn’t have the results from the CT Scan. I saw my regular physician this week and he had the results. And I’ll be candid … they aren’t good. The scan revealed what I already knew — that the nodule on my neck was not the only lymphoma mass that would be found. In fact, by the time I went to the doctor this week, a few more had made their presence known. I have a smattering in the neck area, one in the chest, and several in the abdomen. My doctor, who is a cautious physician, wants me to discuss prognosis with the oncologist. And being me, I asked what value it would have to know a number that is going to be inaccurate anyway?
My first acts to accomplish in 2017 is to get my affairs in order. Not because I believe I’m dying or that I won’t recover, but because it needs to be done and has been on my mind for some time and it is time to stop procrastinating. EVERYONE should have their affairs in order. You never know when that bus is going to run you over. Plain and simple. No one is guaranteed any specific time on this Earth. And now that I’ve said that, I have NO intention of going anywhere anytime soon. I have too much to accomplish with my life and I intend to do it.
My doctor was a little down with my results. My lab results are bad. My scan results are bad. But I was ready to dance a jig because the scan results had one result that made me very, very happy. I have been having near constant pain under my left rib cage for a few weeks, and eating certain foods made it extremely painful, which I have been finding out by trial and error. When with the oncologist, we discussed and we both felt it might be an enlargement of the spleen. Which is something you DON’T want. The scan results showed that my spleen was perfectly normal and the area where the pain is coming from is where there are some lymphoma lumps taking up space. We’re getting ready to blast those with chemo, so they will be going bye-bye, and I’ll just have small, soft meals in the meantime. But there was one little problem. I didn’t have the chemo meds yet and didn’t know when they would arrive. My doc got the oncologists office on the line and asked them to find out what was going on as he wanted me on the chemo immediately. There had been a slight mix-up and the meds had not been ordered, but they got it straightened out same day, and I received the shipment yesterday.
The chemo comes from a specialty pharmacy and so far I am incredibly impressed. They provide a mechanism to help you remember whether you have taken your medication or not as well as timer to put on the bottle cap that will alert you that it is time to take your next dose. And for me, this is fabulous. I don’t do pill dispensers well (it is such a hassle to fill them for me), so the little thing to flip it to show that you’ve taken it IS something I can do. Especially as it sticks directly on the bottle itself. And the timer??? Brilliant. Especially when I lose track of time so easily. Then after they arrived, the pharmacist called and went over how I am to take the medication, what to do, what not to do, and to let me know that they had trained staff available via phone 24/7 if I had any questions or couldn’t reach my doctor.
I will shortly be taking my second dose. So far, so good. A brief period of wooziness, but other than that feeling the same. The biggest thing for me to figure out was when to schedule the dose because I have to take on an empty stomach, so nothing 2 hours prior and 1 hour after (except water), and it has to be taken at the same time every day (hence the handy dandy timer). When I saw that it may cause dizziness, I decided to wait until after I had seen the knee doctor yesterday (yes, I managed to get some fluid on my knee that was giving me some trouble), so I felt after dinner would be good. That way, if I’m not feeling well, I can simply go to bed.
The picture at the top of the post fits the mood right now so perfectly. Yes, there is darkness, but the light is shining through. I am filled with hope and am so encouraged to be taking action to beat this cancer back down into submission. I am blessed in my friends and the number of people who care about me, I will never be able to say Thank You enough.
My doctors always tell me to stay away from sick people — and I have done my best, but there is a part of my brain that wonders how that is even possible. Turns out my best wasn’t quite good enough because I picked up an infection while grocery shopping (I know, I know… I should have left it on the shelf, but the bugger jumped in the cart, and boy have I paid for it). That was early November. Last week, I finally got the all clear from my doc, but it took 2 courses of strong antibiotics to beat it. I am used to responding well to antibiotics, so to have been on one of the stronger antibiotics to begin with to have to need something stronger was a bit concerning. Fortunately, it did knock it out. But the night before my “well-check”, I felt a little pea-sized nodule on the side of my neck. So I pointed it out because I thought it might be the lymphoma making an appearance. My doctor felt the same, so he called the oncologist and I had a CT scan done on Friday.
I had an appointment with the oncologist today (in advance of my quarterly appointment) and she agrees that my blood values are rising too quickly for what is normally a slow-progressing disease, and that the nodule, as well as a few others she found during the exam, are lymphoma. So, it is back to chemo. With a twist. There are new treatment protocols and the one she feels is best for me at this time means that I only have to take a pill a day instead of a monthly drug infusion via IV. WHAT A RELIEF!! I will have to go in monthly to have my blood values checked to ensure the treatment is working as it should, but no spending about 20 hours over the course of 3 days with an IV in on a monthly basis.
The picture at the top expresses exactly how I feel at the moment. So peaceful and calm with a lantern lighting my way.
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.
Old Wood House
Normally, I talk about the picture at the bottom of my post, but as we head toward fall, I loved this particular image for a variety of reasons. The colors, the remoteness, and the feeling like you could hide away inside and nobody would ever find you. For most writers, that idea is bliss. A place where there is only you and the words on the page; a place to shut out the rest of the world for a period of time.
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.
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.
A 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:
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.
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.
This will be short & sweet—I had my follow up appointment for the bone marrow biopsy results this afternoon … the ones that will tell us how effective the chemo was.
*****drum roll, please*****
FULL REMISSION
The doctor was very pleased with the results (and so, might I add, am I.) This is a huge milestone along the journey. She’s going to check me again in a month to make sure my blood values have stabilized, and then I will go on a every three months monitoring schedule for a while.
Time to take my life back.
*****Lights sparkly confetti cannon fuse*****
*****BOOOOOMMM!!!!*****
***fires off confetti cannon***
I have not posted this chemo cycle like I have done the others … one post per day, because I didn’t want to post a series of DONE posts. Which at the moment is how I feel. DONE.
Done with the monthly trips to kill off the bad blood cells. Done with sitting in a chair for hours on end waiting for the drugs to drip into my system. Done with being a pack mule carrying all the stuff to keep me occupied during those hours. Done with feeling myself swell up like a balloon from water retention. And OH SO READY to get my life back to some semblance of normal.
But as much as I’d love to celebrate (and I will because what is each step forward on life’s journey without a bit of celebration) the END of cancer in my body, I cannot. I will celebrate the end of this round of chemo. I will patiently await for the results of the tests that will determine how effective the chemo has been at ridding me of the bad abnormalities they found in my blood system. But the truth of the matter is, however much I want to say done with cancer, it is not done with me.
This is step 2 along my journey with cancer at best (and may there be many more steps, because as long as I’m stepping, I’m living.) The types of cancer I have, chronic lymphocytic leukemia and small cell non Hodgkin’s lymphoma, are not curable (today), so I will be living with them for a while—may it be a long while. Fortunately, they, by themselves, are not aggressive, and can be managed mostly through monitoring my blood values. As long as I keep up with the monitoring we’ll know how things stand and I’ll be able to take my life back. If the counts get out of whack, then we’ll whack back with some drugs and put them back where they should be.
So for me, this is done with chemo, for now. I don’t know whether I will need chemo again in the future, so I don’t want to be categoric about never needing it again. I might. I don’t know. But for now, let the dance party begin. I am done with this cycle of chemo, and that is enough to celebrate. What happens in the future will happen. And I’ll deal with it, just as I have dealt with this episode. Head on, flinching only when necessary.
The truth is that in looking at the grand design of my life (that which I can see at any rate) since I had to go through chemo—this was good timing. Since I had to do it. I have kept busy. Things have been changing on the writing side of life for the better, and things are getting ready to break open there, so better now than later to be isolated from the rest of the world. I need my energy back because I have so much to accomplish … I’m ready to spread my wings and soar.
The balloons in the post header are for the celebration. It’s time to relaunch my life.
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.
Okay… this post is a day late, but I can sum up the reason in a single word ….
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.
Despite having taken the sleeping pill as I do on chemo nights, I still didn’t fall asleep until after midnight. And I took the pill early. I was certainly tired enough to sleep … exhausted is more like it, my mind wouldn’t rest until I made a note about something that wouldn’t leave me alone. I might understand if the thing that wouldn’t leave me alone had ANYTHING to do with the chemo, or the edits I’m working on, or even the book I’m currently researching and plotting out. But the pesky bugger was about a blog post I might want to write, one of these days when I have a few spare minutes. Nothing urgent. And something I’m certainly NOT doing this week.
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.
This will probably be a short quickly dashed off post because I have taken my meds and it’s been a long day already. I was able to have chemo. (YAY!!!) My liver values had gone back down, so that was a good sign. And they are going to wait until Thursday and then give me the white count booster shot, so all is good there as well. Chemo itself went well today.
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.
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.
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. 😉
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) 😀 .
The photo for today involves fog because right now I’m feeling a bit foggy. Today I was focused on the day job and got a lot accomplished. The problem is that when I was done with the day, I suddenly realized I wasn’t feeling all that great. Nauseous, tired, and completely unmotivated to work on anything—even this post. HA!
But then I realized one beautiful thing … I’ve been going through chemo for 4 months now, and tonight I’m more nauseous than I’ve been the entire time … and it’s manageable. I was able to have something to eat (nothing fancy, a helping of mashed potatoes) and I have not become one with the great porcelain bowl. And I’m starting to feel a tad better. Not great, but not as lousy as I was before.
I saw my doctor yesterday and she mildly chastised me for not sharing all my symptoms with her. (Ironically, yesterday I felt great.) And I told her my journey was so relatively light, I don’t really think of the negative symptoms as negative. Yes, after every chemo session I go through a few days of turning into a gas factory … I take the anti-nausea medications she prescribed and keep it in check. Yes, every treatment cycle means I’ll retain water like a camel and it takes a couple weeks to get back to normal. Yes, the injection to boost my white count gives me a headache and backaches, sometimes more severe than others, but these are known side effects, and none of it is beyond my ability to deal with. Yes, I get tired after the treatments, but I’m encouraged by how much better my energy is getting in between treatments.
So the bottom line is, I don’t talk about feeling poorly because I really haven’t had a bad time of it. I know many others who have had a much rougher time, so I feel blessed. But since I am not feeling the swiftest tonight, I am not working on things (other than this post) will probably watch a movie or read a little and get some rest. Oh, and I absolutely attribute my ability to stay well to keeping myself isolated most of the time, and being diligent about wearing a surgical mask when having to go out in public at any time.
