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

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

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

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

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

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