One Down—Five to Go

Where do I even start? It has been a little over a week, but it has gone by in a flash getting everything marshalled and ready to dive into the process of killing off the bad cells again. Plus, the added complication with the leg infection. Which might be a good place to start.

The Right Calf

The oncologist put me on an antibiotic to reduce not only the fever, but the swelling, redness, and blistery activity under the surface covering my entire right calf. The fever went away immediately and hasn’t come back, which meant the chemo could proceed on the 7th, barring any return. The infection hasn’t responded quite as well. Though I saw a reduction in coloring and the swelling had subsided a little, and it covered only the lower half of the calf, it was still tender to the touch and hanging about. The odd thing was that, though the redness had significantly decreased, when we arrived at the oncologist’s office prior to chemo start, when she checked it, it was bright red again (still only half). I’m going to figure that since my allergies were on high alert, it was some sort of systemic allergy running through me attacking the weakened areas.

Part of the protocol I’m on is a high dose of steroid, and that is knocking the rest of the infection/inflammation out, so I doubt it will be an issue for long.

The Miracle

While the calf issue may be a bit of a negative (on the run now), it has been offset by something that can only be described as an absolute miracle. In 2021, when I had a similar tumor (the drama queen) near the same place, it reduced quickly once the pre-infusion meds were started (one month prior to infusions starting) and it was gone before I hit the chemo chair. That was unexpected and amazing … BUT THIS is in the miracle category. The day following my visit with the oncologist, where we were all extremely pleased about only ONE tumor to kill, the tumor was SMALLER!!! Every day, it shrunk a bit more. No medication (except an antibiotic for the calf), so my beleaguered immune system gathered the remaining troops and launched an attack. My fighters may be few, but they are MIGHTY.

The tumor didn’t disappear completely, that was a big ask for a week, but it did reduce by over 50%, so my spirits have been soaring. One question that I have been asked is whether we should wait and see what happened with the tumor instead of continuing on with the chemo. The answer is that even if it had reduced to the point of being undetectable, chemo would still need to proceed to ensure ALL rogue cells have been dealt with. In 2021, though the tumor had disappeared using an oral protocol, we still forged ahead with the infusion therapy for the same reason (plus there were more tumors that had to go.) This morning, after the completed first protocol, though still detectable, the tumor is reaching the point where I won’t be able to detect it for much longer. Which pleases me a lot!!!!

The Chemo

I have nothing but praise for the chemo nurse team. They are attentive, caring, work together, and constantly aware, regardless of what else is going on at the time.

It is usual for the first treatment to be broken into two days since they need to test each patient’s ability to withstand the treatment. What that requires is slowing the drip, then speeding it up at intervals and checking for reactions, which adds a lot of time to the process. Since it is a known factor that I DO react to one of the drugs in the protocol, that once again was tested and based on my history, it was decided that ALL future treatments will be given over two days instead of trying to force them into one. While I did quite well with the other drugs they had to test, the initial test may not show the full picture (the one I know I react to I did fine with the testing period the first time, but when they ran it at “normal” speed, I had the reaction.)

One additional factor—my immune system will require boosting since it is already too low, and the protocol I’m on will destroy what little I have left, so next week I go for my first immune system boost, which will then happen every 4 weeks.

The niceties

From experience, I tend to go pack mule on chemo days. I bring my laptop so I can work on something, usually not requiring a great deal of thought because I won’t have it as the brain fog descends, or I can pull up a show or movie for simple entertainment. In CA, they had iPads for recreational purposes, and here they have individual TVs, but I prefer my own. I bring a blanket (two purposes) because as the chemo proceeds, my internal thermostat will go on the blink and I’ll alternate cold and hot, AND it helps to keep the laptop from burning my lap.

In addition to the blanket and laptop, I bring a thermos of tea, a thermos of bone broth, and a bottle of water. The nurses were somewhat scandalized that I hadn’t brought anything to nibble the first day—to me the bone broth filled that niche—so yesterday, I added some cheese and crackers and a hard-boiled egg. I also brought a bolster for under my knees. The recliners are comfortable, except there is a gap where my knees hit and day 1, that was my biggest issue … trying to find the comfort spot. Problem solved. Add to the pack.

Not only do they have blankets for those patient’s who do not bring their own, but they have a row of shelves where they are kept heated, which is a nice touch. A woman in the tech department had to come to the chemo room for some reason a while back, and noticed the heated blankets. Since she crochets blankets and sells them, she periodically crotches a few for the chemo room and the nurses give them to the patients. I was gifted a beautiful blanket of purple and lavender on day 1. I am touched by the thoughtfulness. The chemo room is also stocked with beverages and snacks, should you need them.

Handcrafted by a tech staff member, it works perfectly across the foot of my bed.

How Am I Feeling?

In a word, tired. Which is completely normal. I was tired by the end of day 1, and yesterday, on arriving home, my brain was foggy, and I was exhausted. Again. Normal. Today, I’m doing well. So far not a lot of nausea (though they gave me HIGH doses of anti-nausea during treatment and I have two different kinds of adhoc meds for that at home) I actually was a little hungry last night, so ate some short ribs, I’d prepared in advance. In a little bit, I’ll take a nap, which will be par for the course moving forward. Other than that??? I’m good.

Shopping Spree

One thing that will be different with this protocol vs. the ones endured in the past is that I WILL lose my hair this time. Which isn’t a big deal for me because it will grow back. Probably more unruly than it is now. The biggest question I had was when I should shave my head. The thought of having to clean up clumps of hair as they fall out just doesn’t sit well with me. Besides, it might kill off my robovac and I cannot have that!!!

My hair will thin over the next three weeks, and then fall out completely after the next treatment … so, I’ll make the trip to a local barber the week prior, get the head shaved and the barber cleans up the mess.

I have always joked that I’d buy a rainbow wig if I lost my hair. And truthfully, I would, except it would be itchy on top of my bald head. Instead, I went on a little shopping spree prior to treatment. Retail therapy with a purpose. I bought several types of head wraps in various colors, all soft to the touch, so my head will be covered. I also bought the leak-proof thermoses in the necessary sizes, as well as some V-neck T-Shirts to make accessing the port easier for the nurses (and more comfortable for me since the line won’t be catching on the neckline.) and two pairs of slippers (with soles) to wear for chemo. The biggest key for me is comfortable, stretchy clothing, and even tennis shoes are too constricting.

Chemo Accomplished

This post has probably been much longer than what the norm will be, but I wanted to bring everyone up to speed on what is going on. The situation is MUCH better than it could be, for which I’m eternally thankful. I don’t think the oncologist has quite recovered from her shock over the test results being so much more positive than anticipated. May that carry through … I’m willing to accept any miracles coming my way.

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Welcome to Rainbow Falls. Last week this time, my head was so fuzzy, I couldn’t think straight, I spent the bulk of the day in bed because of the fatigue levels, I had had a reaction to the chemo the day before and generally felt crappy. Going into chemo this week, I had no idea what to expect. Because the oncologist put me on a precautionary dosage of prednisone for 3 days, I felt better and stronger by Thursday. My fatigue levels weren’t as bad, and my breathing had vastly improved. I’m not saying I was skipping up the stairs, but at least I could climb them without having to take a break afterward to get my breath under control.

Whatever else would happen, at least I was stronger going in than the week before. And this week? No reaction. I saw the doctor after my treatment and we were both cautiously optimistic about the lack of reaction and hopeful it wouldn’t occur later in the day (it did not). But then she gave me some EXCELLENT news. My chemo schedule has changed. The original plan was to have chemo 3 weeks in a row, one day a week, then skip a week and repeat for 6-8 months. Because I am responding so well to the treatment, it will now be 3 weeks in a row, one day week, and then once a month for 4 months. To say I am excited about the reduction in times I’ll have to have an infusion is an understatement

My biggest concern all along was how I would handle the constant barrage on my body of the once a week. My poor body has been through so much over the past couple years that trying to envision that finish line was a bit difficult knowing I would essentially be going once a week without recuperation time in between. Once a month for only one day is SO MUCH better.

The picture for this post is reflective of how I feel. Such a beautiful rainbow image of Niagara Falls. I equate rainbows with hope and going through chemo is a little like going over Niagara Falls in a barrel, so the two together accurately represent my feelings right now. I may still have to navigate the Falls, but hope is shining through for a better tomorrow.

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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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Photo by Anna-Louise

Phew!! Time has been flying by so fast, I cannot keep up … with anything. I had good intent to keep everyone updated as to my progress through this round of chemo, but managed one post after Cycle 1, Day 1, and here is it a new year and I have completed Cycle 4, Day 3 (one more day to go, but that is hydration only, so not too bad.) As we approached year’s end, one question kept popping up.

“What are you doing for New Year’s?”

I cracked up. I’ve essentially been a hermit for the past three-and-a-half years, so it isn’t likely I’d suddenly throw on my party togs for a night out on the town … especially not while undergoing chemo. But I did have an answer for the question.

“Mainlining (chemo) drugs and passing out.

Yes, I spent New Year’s Eve hooked up to a drip in a chemo chair and it was my long day, so by the time I got home, I literally had something to eat and passed out. The fireworks here aren’t for celebrating New Year’s Eve. They are in celebration of two more cycles left in this round of chemo. A celebration of going into a new year hopeful for a nice period of remission where I might get some normalcy in life back. A celebration of the hope that I will soon get my creative mojo back so I can finish the book I’ve been tinkering with. It’s all in my head, it just hasn’t hit the page yet.

How have I been doing? For the most part okay. I have been having more sensitivity to the chemo drugs as far as allergic reactions go this time. But that is due to my having a reaction to more than one of the drugs. My fatigue levels are high, so I manage to get through the day job and pick at some of my writing stuff, but haven’t accomplished a whole lot. Which is frustrating at times. But for the most part I focus on getting through the next couple of months with the anticipation that I won’t feel quite so tired and then will be able to get things done.

Part of my ability to get through the day job was that I took the month of November off to give myself extra time to rest. My fatigue levels had been creeping up even before I knew I’d be going through chemo. So I had already planned to use a good chunk of vacation time. At the end of the vacation, I wanted another month. I’m still tired most of the time.

Unfortunately, extreme fatigue does not always equal good sleep. If only it would. HA! The next two months should be interesting. Before I know it, it will be chemo time again. Time to pack the blankets, snacks, liquids, and laptop. Time to dredge up the energy to get out of bed two hours earlier.

The passage of time between cycles is swift, but the time in the chair is long.

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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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