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This month marks a big milestone … the 10th Anniversary of my leukemia & lymphoma diagnosis. I have decided that this is something to celebrate. After all, I am still here, still fighting, and still no closer to giving up on life—I have far too many things to still accomplish. So I decided I should see what anniversary year it is, and found that it is Tin. Perfect.

What better way to celebrate 10-years than with the Tin Man from the Wizard of Oz? After all, getting a cancer diagnosis is a lot like being swept up by a tornado and finding yourself in a strange land after dropping out of the sky. Then, before you can get your bearings and come up with a plan, you're surrounded by all sorts of people offering advice. If only you X or maybe if you Y … all well-meaning and helpful, but notice, NONE of the munchkins traveled the road with Dorothy. They couldn't. And this is not a road I'd wish on anyone else.

Don't worry, I'm not leaving out the Wicked Witch—SHE'S the cancer in this story. So off you go on your journey to find the wizard, aka the magic combination of things to keep you as healthy as possible while living with the disease. You have no idea what's ahead, but have been told of treacherous country and winding, unsafe roads.

My Road:

I thought I'd take a few moments to recap my journey over the last 10 years.

• July 2013 during a routine exam, diagnosed with leukemia, which had been caught at the very beginning stages and was told it would be a slow progression disease and I may not need chemo for 10-15 years.
• October 2013 further diagnosis based on additional test of lymphoma hiding in the blood stream. Additionally, diagnosed with two sets of abnormalities that make my particular cancers very aggressive. Let's just call them the flying monkeys that swoop in and attack periodically.
• November 2013 saw the start of my first set of chemo infusions, which lasted for a 6-month period.
• May 2014—Full Remission
• April 2016—Remission Ended Begin watchful waiting something I do not do well.
• October 2016—My blood values were out of whack, but the oncologist felt we should still watch and wait. So my general state of well-being kept deteriorating, fatigue levels increased, etc.
• December 2016—After some difficulty fighting off a skin infection, and identification of some lymphoma nodules, the oncologist determined the cancer was becoming too aggressive, so it was time for treatment again … only this time it was a daily oral pill. WoooHoooo!!!

• For everything in life, there seems to be some kind of trade off, and with taking a daily pill, the suppression of the immune system meant that while not having to go through chemo infusions, I did need to have infusions to boost my immune system regularly (about half the year each year)
• January 2019—Hospitalized with Scarlet Fever, I had to come off the pill (due to the suppression of the immune system any time there is infection, you have to stop taking it). Since I had been on it for two years and was experiencing several side effects, we decided to keep me off it for awhile.
• Remission only lasted 5 months and by October 2019, I was back in the chemo chair for infusions using a different protocol than the first time round.
• March 2020—I had finished the chemo, but wound up in the hospital with what the doctors decided was chemo related infections. Let's just say they were awful enough I don't ever want to have to fight those off again.
• August 2021—Visible lumps identified and new chemo course ordered … both oral and infusion. While one of the lumps went away as soon as I started the new protocol, the other didn't, so I finished the year off with radiation on top of chemo.
• December 2021—Merry Christmas to me. I spent it in the hospital with double pneumonia caused by the chemo protocol.
• 2022 to present—I've been keeping to myself, taking the oral targeted therapy and holding my own. Though I do have some cysts that are hanging around, they aren't growing and remain stable. So all is good.

Now back to why I'm celebrating this anniversary with the Tin Man. One of the things I've always loved about Baum's work is that those who helped Dorothy find her way had one thing they felt they lacked and wanted to see the wizard so they could gain it once again. The Lion wanted to be brave, the Scarecrow wanted brains, and the Tin Man wanted a heart. But as they journey forward, we see that the Lion IS brave, the Scarecrow IS smart, and the Tin Man had an abundance of love in the heart that in his eyes wasn't there.

For me, the Tin Man represents passion … finding the heart of your desires and keeping it alive. Even the times when he'd get rusted up (from crying over something) resonates with me. I have my passion in my writing work and focusing on that helps me get through my days. Yeah, some days are creaky, where I don't feel well, it hurts to move, and I have no spoons left. But when I write, it takes me away from all of that and keeps me plugging away toward a future when I hope someone will come up with an answer for the beast I live with day in and day out.

So while it may seem a bit odd to celebrate having cancer for 10 years, I'm celebrating the defeat of the Wicked Witch. One day, may she melt FOREVER.

Here's to the next 10 years because I plan to be here to celebrate it when it arrives.

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The FANTASTIC news is that the lump in my breast is long gone. I call it the drama queen because it grew and receded with a flourish. The lymphoma on the back is taking its time on reducing. It is, but so much more slowly.

Thursday (and Friday) marked the first dose of the infusion therapy. I honestly didn’t know what to expect this time round. Most of the reading I have done on the drug includes MOST people having a reaction on day 1. In fact, the way they give it includes getting the patient adjusted to the chemicals over a two day period for what will be a one day process in the future. You have one-tenth of the dose on day one, and come back the next day for the rest.

Since I react to EVERYTHING, I wasn’t sure how things would go, but day 1 … smooth as silk. On Friday, I expected to be there all day long because Thursday took 4 hours for a tenth of the dose. I was so surprised when they told me I only had one bag and was done by noon. So I happily came home, unpacked all the stuff I took with (laptop, blanket, pillow, etc.), and decided to rest a bit.

That’s when my body finally decided to react — my chest tightened and breathing was definitely labored. I used my lowest level inhaler and the breathing eased, and I called the oncologist to let her know what was going on. As a precaution, she put me on steroids for a few days.

Other than that, things are going well. I am tired … even more so after the reaction, but today my head is less foggy and I am feeling better.

We get to do the thing all over again on Thursday. I expect we might run the drip a little more slowly, though I could be wrong. Hopefully, I’ll acclimate to the treatment and we can keep going,

The picture for this post is to remind me to focus on the beauty in things and let all the garbage and negativity fade into the background. I do have so much I am blessed with and am fortunate to have all the good people in my life that I do. Though I cannot get out and about these days to see people, I value your support through this time. It means so much to me.

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Suddenly, my habit of wearing a mask whenever I left the house was “normal”. Staying home, ordering things to be delivered, avoiding crowds … all of that became what everyone was doing. I was in good company—just as long as everyone maintained social distancing. While the United States is looking for the return to what will undoubtedly be a new normal, my path ahead isn’t quite as clear.

At the end of April, I identified a lump which turned out not to be in my breast, but in the skin surrounding the breast. Since that time I have been undergoing tests and we finally have the answer. Eight years ago, I was diagnosed with Chronic Lymphocytic Leukemia (CLL) and Small Lymphocytic Lymphoma (SLL). They are usually diagnosed at the same time as they are two sides to the same blood disease. Up until this point, the CLL has been the dominant beast to battle and the SLL has been in hiding. Now, my blood values, after the previous round of chemo, are stable, but I have identifiable lumps that need to be dealt with.

Last year I was hopeful that after completion of the chemo I’d have at least 5-6 years of remission to look forward to. But instead:

FAIL!!!!

When we think of life and the road ahead, I think most of us would prefer a wide-open highway—straight lanes, long horizon, no obstacles in sight. Instead, it is more of a winding path, full of twists and turns, blind curves, and obstacles scattered along the path. Right now, I feel a little like I’m on the path in the picture. It isn’t paved, but it has been traveled before. I might have to duck from the things hanging over my head and will have to be careful not to trip over rocks or fallen branches along the way. While it is slightly oppressive and dark, there is light at the end. I just need to keep the light in my sight and keep moving forward.

What next? I start chemo next week, and we’re hitting it with a double-barreled approach: a daily pill and another cycle of infusions … this time once a week for three weeks, then the fourth week I get a break. That will be one cycle. I’ll have to go through 6-8 cycles (months) before we call it complete, and will likely stay on the pill past that time.

Not what we had hoped for, but as always, we keep moving ahead.

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The image of the roller coaster is an apt description of how yesterday went. I normally try to get my chemo updates done same day, but by the time I made it home I was well and truly exhausted. The day started early because of the 0800 start time. The staff and I always joke about me being the first one in and last one out. And I definitely go prepared for the long haul.

I finally got smart this time — in the past, I’d do my imitation of a pack mule. A shoulder bag with a blanket, thermoses of tea and coffee, and water bottle crammed into it, a thermal bag filled with Perrier, things to eat, protein drinks, cold packs, and most importantly, my laptop. I have spent from 8:00AM to 6:00PM in a chemo chair, so it is essential to carry things with you. Once you’re in the chair, you cannot nip out to get something to eat. And I’m not a magazine reader and don’t like staring at the walls for 9-10 hours.

This year I upped my game when I remembered the cart I use to transport books — a cart on wheels. And I could bungee my laptop to the handle. Win-win. It was SO MUCH easier than trying to CARRY everything. A good start to the day, for sure.

The actual chemo

When getting me hooked up, the chemo nurse hadn’t dealt with my particular port before. The surgeon placed it differently than most. It is higher, and somewhat deeper. Fortunately, one of the nurses present had connected the port several times, and showed the newer nurse how it is done. Then I settled in, pulled out the laptop and tried to get a few things accomplished.

About half an hour in, I struggled a bit to catch my breath. A weight settled on my chest. My face flushed. I knew the signs. Allergic reaction to the meds. I alerted the nurse and she stopped the drip and added a saline bag to help dilute the intensity.

Fifteen minutes later, my breathing eased and the weight lifted. Shortly after that, we restarted the drip, but ran the saline at the same time. Next, the aftermath to the reaction happened. I started shaking uncontrollably, and freezing like being in the middle of a snowstorm with no protective gear. My teeth chattered and my fingers shook so badly I couldn’t type. I grabbed a fresh thermos of hot coffee and sipped a little at a time — there was nothing else I could do but wait it out.

Once the reaction and aftermath had passed, the rest of the day ran smoothly. So smoothly, I completed my treatment almost two hours earlier than anticipated. Hurrah!! I contacted my mom, my ride for the afternoon, and waited for her to arrive.

By the time I arrived home, exhaustion had set in. Despite the exhaustion, without a sleeping aid, I wouldn’t have been able to sleep. So I took my pill, had something to eat, crawled into bed, and oblivion took over. A solid sleep, with only a couple of interruptions.

Tomorrow we go for chemo day 2. It will be MUCH shorter, and I do not have to have the drug I’m allergic to, so it should be a decent day.

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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.

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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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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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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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