Some of y’all have been following my cancer journey, so I’ve been open about my experiences in the hope that it helps another person who might be facing the same journey.

Yesterday, I went to the clinic for my regularly scheduled Jemperli infusion. My third one, or it was supposed to be. Jemperli is a medicine I was tolerating well, that only required me to come in every six weeks. I had no side effects that I could detect. Everything was good.

Well, after fully reviewing all the results from my surgery on April 1st, which involved removing all my girlie parts plus my omentum, he determined there were still microscopic “remnants” of cancer in my body, so he wanted to switch my treatment protocol to another set of meds which would more aggressively treat the cancer that remains.

I will now be receiving infusions of another immunotherapy drug called Keytruda, plus a daily pill called Lenvima. As well, I will be going for infusions every three weeks. This will continue, possibly for the rest of my life, or perhaps (hopefully), until I reach remission and I’m deemed “cured.”

I got my first Keytruda infusion yesterday. After I came home, I felt completely wiped out. I sat watching TV for the remainder of the day and went to bed early, sleeping like a rock. For the next few days, I’ll be very conscious of what my body is telling me so I know what this experience will be going forward and whether I need to block out days on my calendar, like I did during chemo, to make sure I can plan my life better.

The list of normal aftereffects of this protocol are many. Fatigue (check), diarrhea, shortness of breath, kidney problems, liver problems, headaches, rapid heartbeat, skin rashes, mouth sores, dizziness, and on and on. Whether I have all or some of these “usual” aftereffects, I’ll let you know.

So, yes, I’m not happy, but my oncologist did start with the positive news that my CA-125 cancer antigen test number has improved again. At my worst, it was 1100. Now it is 15, which is within “normal” range. So, yes, I’m doing so much better, but I’m not happy about more frequent treatments and a stronger medication protocol, but it is what it is.

The most important thing I’m going to focus on right now and going forward is that I’m still here. My family keeps me grounded and happy. I won’t go without a hard damn fight.

Early in the week, my pee suddenly became a bright orange-pink. Bet you haven’t read something like that as an opener on another writer’s blog, right? Anyways, I sent a urine sample via my dd to my general practitioner, and they put me on antibiotics for another UTI. So far, so good. I’m peeing yellow again. For someone who hadn’t had a UTI in years, having two in as many months is a PITA. I’ve read that’s not uncommon after a radical hysterectomy, though, so I’m not overly concerned.

School ended for the kids this past Wednesday! Woot. We celebrated with takeout and a movie. We watched A Minecraft Movie, and I guess we were in the mood for a silly one, because we all laughed ourselves silly. The 16-year-old provided a critique of how well the movie matched the actual game (she’s a gamer, and Minecraft is one she loves). If you like a childish, zany adventure movie, this one’s for you. It’s a one-timer for me, but we bought it because the 11-year-old will be watching it over and over this summer, no doubt. She already knows the songs Jack Black sang.

I’ve been busy trying to get back my stamina to complete the work I have in front of me. Editing has been going well. My personal space needs some work—straightening, cleaning. While my family pitches in, I like things to be kept in a certain order, so I’ve been trying to give myself little tasks every day to set things right.

In early April, I had my Christmas cacti placed outside on my back porch. It gets morning sunshine only, so not too much for indoor plants. Both plants surprised me with another blooming. Not as many as in late fall, but lovely just the same. The red plant buds are very sparse, but the white is giving more blooms. The picture I’m using for today’s puzzle is one of the white cactus. Have fun!

Solve the puzzle, then tell me some random things that are happening to you in your neck of the woods for a chance to win a $5 Amazon gift card!

UPDATE: The winner is…Beverly Blank!
*~*~*

April

Work-related:

1. I completed 2 editing projects for other authors in April!
2. I pushed the deadline for submissions for the anthology entitled Burn until mid-June.
3. And yes, this is such meager progress, but the fact I did anything at all is a miracle! 🙂

Health-related:

1. The big accomplishment this month was that I underwent surgery on April 1st to get my girlie parts removed. I’ve been recovering all month since, and there’s still a ways to go.
2. I had another immunotherapy appointment, so I’m good to go for another six weeks with my cancer treatment.

Happiness-related: 

1. I resumed my participation in #the100dayproject around mid-month. Here are a few small pieces I completed:

May

For work-related, I plan:

1. To complete 3 editing projects in May.
2. To assemble a group of short stories to publish together in a second Ultra Strokes volume.
3. To continue writing Ignition. It’s time to get back to the real work!

For health-related, I plan:

1. To focus on recovery! Rest and light exercise.
2. To start swimming as soon as the pool is ready. I figure I’ll be healed enough by mid-May! Woot!
3. To see an optometrist to address the issue of the deterioration of my vision due to chemo. I need a new prescription, but I also want to know what I’ve lost and if it will get worse.

For happiness-related, I plan: 

1. To spend time with the family while I recover from surgery and get ready for the summer break. I can’t wait to have the kids home.
2. To continue the #100dayproject and create more art.

Contest

Comment on anything you’ve read in this post. Tell me what you’re doing to make yourself happier and healthier, or tell me what you plan to read in May…

Like I said, comment on anything for a chance to win a $5 Amazon gift card!

UPDATE: The winner is…Debra!
*~*~*

So, yesterday, I met with my oncologist. My daughter came with me because I’m still muzzy-headed and forget things. I’ve been extremely fatigued since my surgery, and I nap a lot. I was worried about the surgeon’s recommendation that I do another three rounds of chemo and how that would affect my summer and recovery. I’ll admit to being a little depressed at the idea.

My oncologist made a face when I mentioned what the other doctor said and shook his head. He said, you did amazingly well with the chemo, and the surgeon got all the diseased organs he could find. Yes, there was still microscopic evidence of disease in the parts he removed, but immunotherapy should help keep anything lingering in my body in check. He wants instead to give my body a chance to fully recover from the chemo and surgery. He’ll order scans in a month or two to make sure the cancer doesn’t come back, but we can do immunotherapy for a while, continue to scan, and if necessary, at a later date, reconsider more chemo. In the meantime, my job is to get healthy and feel well. I was enormously relieved. I will do whatever he tells me I should because we’ve already accomplished so much. I trust him.

At the end of our appointment, he asked, “Do you want to do an immunotherapy session today and get that knocked out? I won’t have to see you again for another month.” So, I sat in the chair for an hour with an IV running and did that. Usually, immunotherapy doesn’t affect how I feel all that much, but today, I feel nauseous and tired. I’m run down. I’ll pay attention to how I feel, rest when I need to, make myself putter to get myself moving, but yay—I won’t be losing my hair again. Right now, it’s super short and mostly silver. I look like Judy Dench. My dd has been working on getting the pool ready for me. If she gets it pretty and blue, I should be swimming by mid-May. That will be a huge boost to my happiness.

Anyway, that’s the report. At some point, I might talk about things that were helpful to me during this journey that might be helpful to others. But right now, I have work to do and naps to take. I’m just so happy and relieved that I have more time with my family and time to be me. In May, I hope to return to my art guild meetings. We’re having a decoupage mini-workshop in May, and I want to be well enough to attend and participate. In the meantime, I’ll edit and paint and poke my head in the door here to say hello.

Word Search

Summer is my favorite time of year, and yes, it all revolves around the pool. It gets hot as hell in Arkansas, but we enjoy our summers. We hit the pool, we barbecue, use the smoker and the blackstone beside the pool to cook wonderful meals. We have movie nights, including a few that we watch with an outdoor projector when the mosquitoes aren’t quite so bad. I love being outside to watch the chickens who escape their pen and peck around the yard. The goats and geese are fun to watch as well. We fill bird feeders and watch the variety that come to our property, along with the deer and foxes who come to our pond. Of course, there are trips to the flea markets. I can’t wait to have the kids home. Their noise—the music and laughter—really picks me up.

For a chance to win a $5 Amazon gift card, tell me what you look forward to this summer (or winter, if you’re down under!).

Well, I met with my surgeon yesterday.

From his POV, everything is going swimmingly. Even the UTI, with the gloriously named cause (Morganella Morganii), is responding well to the antibiotics. He renewed that prescription for an additional week just to make sure we wipe it out.

As to the results of my surgery…

Again, he stated he’d taken out everything he could visually detect. My body bits were sent to a lab, and they did find microscopic evidence the cancer was still alive. Not unexpected. He saw some in the omentum, which they fully removed, some in my uterus (also gone).

His recommendation to my oncologist will be that since I did so well with chemo, knocking it back so much, and my body appeared to tolerate it, that he would like to see me undergo three more rounds of chemo before I go back on immunotherapy maintenance.

Today, I’ll set up an appointment to see my oncologist to discuss what happens next.

I really, really didn’t want to hear that I’d be going back on chemo. It’s painful, it drags me down, and I just started regrowing my hair (I know, that’s not important, but…).

Three rounds would put me through the end of summer, which will really hit my pool time hard, and I’ve been holding onto dreams of floating in the pool with a margarita in my hand to keep myself feeling upbeat. So, yeah, today, I’m a little down.

I’ll allow myself a day to feel sorry for myself. But I’m determined to “graduate” from sleeping in my lift chair to resting in an actual bed this weekend—even if it’s not my own just yet. My dd wants to be nearby in case I run into trouble in the middle of the night, so I’ll accede to her wishes. She’s been an absolute gem, and I don’t want to make her work harder.

All my plans for what I’d hoped to accomplish this summer have to be reviewed. I’m sure I can keep busy with editing, but writing…? Good Lord. Am I even still a writer if I’m not writing? That sounded like a distinct whine.

Anyway, I plan to run a contest tomorrow and catch up on some that already posted because it’s time to wrap them up. I hope to get back to regularly posting very, very soon.

In the meantime, hello from me. I hope you are all doing well. I’d love to hear your plans for the coming summer/winter, depending on where you are in the world. ~DD

So, I’m poking my head in the door. It doesn’t mean I’m back to my daily routine just yet, but I thought I’d let you know how things are going. I’ve shared (over-shared, I’m sure!) about my cancer journey so far, and I don’t intend to change that. The emails from online friends out there who have loved ones or who have or are going down this road have been moving.

Anyways, back to the subject.

I had surgery on April 1st. April Fool’s Day. My old wedding anniversary. My ex-hubby laughed at the date and said, “Ah then, everything is going to be fine, because we didn’t turn out so bad.” I have to agree, as odd as that sounds I’m sure to some of you since we’re divorced, but we’re still great friends, still sharing phone calls and birthday wishes. April 1st is a lucky day for me.

The doctor had thought he’d be taking out more than he did. First, he went after the omentum—it’s an apron of tissue that protects your internal organs. When he eye-balled it, he saw no living cancer on it although the omentum had lit up like a Christmas tree on my first PET scan all those months ago. Then he removed all my girlie parts, noting that he saw very little remaining cancer there. Mostly just slimy bits of dead remnants of cancer (I’m interpreting his notes, maybe embellishing a bit—can’t help myself).

He was going to take my lymph nodes down there. But other than some dead slime (more embellishment), he found them pink and healthy-looking so did not remove them. He hunted around my liver, gallbladder, intenstines, etc. He had said he’d remove anything he found infected (if he could), but found nothing else of concern. When he spoke with me later that afternoon, he told me my chemo had done an excellent job of knocking back the cancer. He was pretty sure he’d gotten everything he could.

Are you wondering why I included a picture of a zipper at the start of this post? Well, they closed with a long line of staples (27 in all) and my belly looked like they installed a zipper in it. (My attempt at humor.)

My sister, Elle James, stayed with me in the hospital for the two days and nights that followed.  She was a huge help. You need an advocate, someone to stomp down the hall to ask for pain meds. BTW, Dilaudid is fabulous. Opioids definitely have their place. It hits fast and only lingers a couple of hours, but when you need something fast… In a hospital setting… Mm-hmm. Highly recommend.

I went home on Wednesday with a soft pillow clutched against my sore belly and one last dose of Dilaudid to hold me until I got home an hour away.

Sis left soon after. Storms were brewing, and she still had a four-hour drive. Then I was left in my daughter’s gentle care.

When I’d been away, my SIL moved the reclining lift chair he’d purchased for me from my living area to the living room. Now, every time I need to get to my feet to move around (exercise is key to recovery), the chair stands me on my feet with little to no intervention from anyone and no straining of my belly. As the days have passed, that’s been very important to my independence.

Everything was moving along well. I was convinced I was going to have the easiest recovery known to womankind, but then…my temperature started climbing and my wee-wee-hole (no, that’s not the technical term, so don’t quote me) began to hurt. In fact, my entire pelvic floor area began to ache every time I attempted to relieve myself. I suspected a UTI and Dr. Google agreed, so I called my surgeon’s office and asked if I could have the urine sample taken at my local doctor’s office rather than head back to the city to pee into a bottle). He approved, and I was quickly put on antibiotics for a UTI. Not just any UTI, but one caused by an emerging super-bug with a very pretty name: Morganella Morganii. M. morganii turned my pee into the most brilliantly colored sunset orange I’ve ever seen. You know I’m going to be mixing colors to try to match it—Indian yellow, cadmium red, a touch of magenta or fuchsia…

I was headed to the surgeon’s office the next day (last Thursday) anyway, where an RN with the nickname of Buffy (it was just meant to be), removed all my staples. It wasn’t supposed to hurt, but maybe I’m just a big baby. 27 little needle-y pinches took my breath away.

I’m finally able to sit up for longer periods in my chair. I’m taking naps during the day on a bed with many pillows. My daughter has to help me up, but she was CNA-trained, so she knows how to get me up without causing any pain at all. My discomfort from my UTI is fading. My temperature is back to normal.

This coming Thursday, I’ll be back in Little Rock to see my surgeon. He’ll let me know his official findings and hopefully let me know when he recommends I continue my immunotherapy. (And more importantly to me—when I can jump into the swimming pool.) This journey isn’t over, but so far, I’m tolerating the treatments.

And that’s all I’ve got. I hope everyone out there is feeling well, loving the changing seasons. I didn’t even mention the huge flood we had right after I got home from the hospital, but yeah, the local river rose its highest since 1969. We were cut off from town for a couple of days there. Life’s just so interesting like that.

This picture was taken just down the hill from where we live and over a mile from the river.

UPDATE: The winner is…Dana Zamora!
*~*~*

March

Work-related:

1. I didn’t write a single word in all of March. I really didn’t intend to. I had too much on my mind.
2. I completed 5 editing projects for other authors in March!

Health-related:

1. I had an immunotherapy appointment. Such a breeze after chemo!
2. Otherwise, I pushed my health and my stats completely out of my mind. I didn’t need the stress!

Happiness-related: 

1. I attended my art guild’s meeting this month for a Show & Tell of what we’ve all been working on. It was really nice!
2. I painted every day until this last week as part of #the100dayproject. Here are a few small pieces I completed:

April

1. To complete 1 or 2 editing projects in April, but not beginning them until mid-month to give myself time to recover.

For health-related, I plan:

1. To undergo a radical hysterectomy, plus a couple of other organs on the 1st!
2. To undergo immunotherapy whenever my oncologist says I’m ready for more.
3. To rest and recover!

For happiness-related, I plan: 

1. To spend time with the family while I recover from surgery. I’ll be in the living room in a lift chair for quite a while. I’ll be impossible to ignore. LOL.
2. To continue the #100dayproject when I’m ready.

Contest

Comment on anything you’ve read in this post. Tell me what you’re doing to make yourself happier and healthier, or tell me what you plan to read in April…

Like I said, comment on anything for a chance to win a $5 Amazon gift card!

See you later!

I won’t be posting again until I feel well enough to do so. I do have some guests lined up to post while I’m away. Please be sure to stop in and tell them hello and thank them for picking up the slack for me! Until then, I hope you all stay safe and find happiness in all the little things. Love, DD