HOSPITAL STAY, FIVE DIFFICULT WEEKS

November 11, 2025

Starting near the end of September, the 21^st to be exact, life took a crazy and terrifying turn. This will probably be a long post, so sit back and relax. It may get personal and or graphic, so I won’t feel offended if you choose not to read.

I started having pain in my bottom, starting as just when I was sitting, and eventually just hurting madly all the time. Due to spending my life since birth with the arthritis, I’ve learned to ignore pain, and so I ignored it. But eventually, on September 21, I was in total agony. I asked my sweet, beloved sister, Rosie, to come over. She said I was bleeding all over my bed—lying down was the only partly easier way to stay. She called 911 and off to the hospital I went. I was terrified to say it bluntly. I was admitted to the hospital that night.

It turned out I had an abscess on my left buttocks. There were a couple different ways to handle this. One was to do a colonoscopy to make sure nothing was going into the abscess, and the other was to operate on the abscess. On the day after I arrived, everything in my body was out of control. I’ve always, always, had normal blood pressure, but now it was bouncing around from low to high. My heart beat was erratic, and it’s always been steady. Rosie read all the medical note on my file—she is my medical proxy and has access to anything like that—and she says she thinks I was near sepsis and ICU. We tried the colonoscopy, though I dreaded it, but after two days of the treatment to clear the bowels, they still weren’t clearing. I guess I’d been constipated for a while. So, I had the surgery. The abscess was highly infected, but this was the very beginning of the road back.

The hospital people were incredible. I was impressed with how the nurses responded, how at change of shift, the exiting nurse introduced the incoming nurse to me. The food was good. the people were highly compassionate. I felt safe there, though I was still scared.

On the 29^th, I was transferred to a rehab/skilled nursing facility. Life exploded. They spouted questions on me, like what kind of emergency treatment would I accept, what mortuary they should call should I die, and many others. I was so very scared. I was put in a room with two other women. One liked to run the TV loudly at all hours, and the other yelled at the staff who worked on her. Across the hall was a patient who day and night cried for help, for water, for the door to be opened or shut and so forth.

I will say the nurses and CNAs, certified nursing assistants, were mostly kind and took good care of me. But the night shift people were lax. Often, if I rang my call light, it might take them an hour or more to respond. The hospital always had someone answer right away.

Meals were horrible. Often spicy food and messy food, when you consider eating in bed. Try eating a bunch of rice while in bed. There was the standard meal and an alternate, but nobody would tell me what the options were. The rooms were supposed to have the menus, but mine didn’t. I had three decent meals: a cheeseburger patty, lasagna, and a cheese pizza. I just wanted to go home, to be able to sleep decently in my own bed, and to be able to eat food.

I was there four weeks. I did everything possible to be able to go home, worked with PT AND OT, followed the advice about healing the wound, cooperating as much as I could. But I was truly scared every day and night.

Here’s something funny in the midst of the horror. One a week the wound care doctor paid a visit. He rushed in, looked at my wound, mumbled something to the nurse helping him, said it was good, keep on doing the treatment, and then he rushed out. Doug called him Dr. doppler, and so he is to me forever and ever.

At last they started talking going home, and I was back in my sanctuary on the 31^st of October. No, the wound is not totally healed yet. It needs treatment twice a day. I have home health care coming a couple times a week. My dear blessed neighbor does the treatment other days. Rosie has learned to do the treatment as well. everybody says the wound is getting smaller every day, and I’m hopeful.

I hadn’t mentioned this before, but I was supposed to start training with a new dog from Guiding Eyes for the Blind on september 30. Obviously, that did not happen. Providing I continue to heal, I will still be able to train with the dog once my doctor can say I am recovered enough to handle it. I’m not ready yet. the dog was trained especially for me, so she’s mine. I’m hopeful.

It’s been a very hard five weeks, and it’s not over yet. But I’m home, and all the people say improvement is coming along as it should. I try to move around, rest on my sides, instead of sleeping on my back or putting pressure on the wound. I still feel scared something, still worry, but mostly I’m feeling like I’m going to make it.

Doug’s dog Kenton has been sleeping on my bed almost every night, and I can’t express what a comfort he is. He drives away my fears and the nightmares. Good boy!

I’ll close by talking about the positive, the amazing support I’ve received from Doug, Rosie, and Julie. I could not have gotten through this without them. Rosie is a stalwart rock, giving me her love and support. She even bought a different car, because I couldn’t easily get in the one she had. When I said something like “but you love that car” she said, “I love you more.”

Julie is my neighbor and friend. She came to the care center to learn how to do the wound care and is the primary person for this in between home nurse visits. It’s an incredible act of caring and friendship.

Doug had just gone back home four days before I went in the hospital. He turned around and came back. He signed up for paratransit, used Lyft with mixed results as all guide dog handlers probably understand, just so he could get to the care center every day I was there. Now he’s staying a while longer, is cooking for me, helping me get dressed when my arthritis is out of control, listening to my concerns, and just being the amazing best friend he is. Oh, and he bought me a stuffed animal toy, an elephant! I love elephants.

I couldn’t ask for better signs of love and sticking by me than from these three people. May God bless them overwhelmingly.

NEW PLAN AND FEELINGS

July 31, 2025

If Harry Potter was a real person, he’d be 45 years old today. What does that have to do with anything? Nothing at all. Just a thought.

I had that appointment with Dr. Z on July 14, and we’ve started another new plan. I also had a scan after that, just a chest scan, as that is where the cancer is. So far, anyway. I don’t have the results on that yet. Radiology said it would take up to a month to get them. I see Dr. Z again on August 11.

So, what’s the new plan? The plan is to try taking one of the 20 MG Cabometyx every other day. This is to try to prevent the Hand and Foot Syndrome from occurring. I had asked if there’s anything at all I can do when I get the foot sores, creams, Neosporin, anything to go on the sores, so I don’t have to stop the meds. He said no, that the only thing is to stop the meds altogether. I’ve been on this plan for two weeks now, so far so good. But then, I didn’t get the foot sores until I’d been on the 20 MG pills for a month last time. I’m not particularly hopeful about this plan, but I trust my doctor.

I’m doing okay physically on this latest plan with the Cabometyx. I have a lot of fatigue, but no fever, pain, mouth sores, nausea, diarrhea or constipation, or any of the usual symptoms. Yeah, physically, I’m doing as well as can be expected I guess.

I had to have my port flushed a few days after that appointment with the oncologist. Apparently, the port can seal itself if it doesn’t get liquid through it at least every 12 weeks. I wonder why Dr. Z has me continue to have the port, if we can’t try immunotherapy again. It only took a few minutes to do the flush, run some saline through it and presto. However, though I didn’t have such severe symptoms, no chills or fever, I did throw up in the night after that appointment. This time there was no medicine being pumped through my port, so I wonder if there is something about the process, or the saline, that could cause nausea and vomiting. That’s the second time I’ve been sick after visiting the infusion center. Ugh.

My arthritis is still not better after the immunotherapy. Dr. Z cut the Prednisone in half, since we’re supposed to taper that off, not take it continuously forever. Now, every morning my hands are so stiff. Even typing this is difficult. I worry about how things will be when Doug goes home in September. I can’t do things like hold and pour a gallon jug of milk anymore, or even the gallon jug of distilled water I use. I couldn’t hold a half gallon of something like milk. I usually drink a glass of milk every evening. There are so many things you do with your hands, and it’s all hard for me now. What will happen when I stop the Prednisone altogether? I’m not supposed to take something like ibuprofen because the cancer meds and the ibuprofen can cause internal bleeding, so we don’t want to double those two together. The arthritis issue is discouraging and frustrating. I’ve been fighting this disease since I was born, fighting and beating it. Even though it took its toll on my joints and caused my blindness by damaging my optic nerve, I beat the odds. I should have been in a wheelchair by my twenties, but here I am 67 and still mobile. But this thing with my hands limits me in so many ways, and I just can’t bear arthritis on top of cancer.

My feelings? I live in my head a lot. I binge watch TV, The Amazing Race, Chicago Med, Chicago Fire, Blue Bloods, documentaries, old movie favorites, anything to let my mind escape. I am discouraged, and I did tell Dr. Z so last time we met. I was first diagnosed in 2021. We found the cancer had spread in 2024, and I’ve been on treatments over a year now. I kinda feel guilty that I’m discouraged after a year of treatment. I mean, I watched my dad suffer from his treatments longer than that, and I’m not nearly as sick as he was with his traditional chemo. I’m tired of trying to be positive. I’m tired of being strong. I’m tired of keeping my chin up. Part of me very much wants to wallow in the negative side of my feelings and let them run free around me. I know I can’t do that, but I want to. This coming Tuesday is my dad’s birthday, and this year, I’m missing him terribly, wishing I could curl up in his lap, with his arms around me, and hear him tell me I’ll be okay. I wish I could do the same with Mom, but she is far away and has her own health things to deal with. I guess I’m just wishing I could be a little girl when dad and mom could and did solve all my problems. or it seemed like they could and did. I’m tired of having cancer. I want to know the future, what’s going to happen to me. Will anything work against this cancer? Will it spread to some other part of my body. The lungs aren’t the only place to which kidney cancer can spread. Where will I be in a month, six months, a year? I’m just so tired.

And that last paragraph is why I haven’t posted in a while. It’s still hard for me to write about the negative side of my feelings and thoughts. I’m not used to sharing that kind of thing with the whole world. However, I did determine when starting this blog, that I would be honest. There’s no point in keeping a blog if I’m not honest. And maybe someone will read this, someone going through cancer treatments and feeling alone. Whoever that may be, they’ll know they aren’t alone. Maybe.

I’ll try to update after seeing Dr. Z on the 11^th. Until then …

WHAT NEXT?

July 10, 2025

I realize I haven’t updated in over a month, but I just didn’t have a lot to say. Things have been happening, but I just didn’t feel like writing. Shani’s death threw me out of my bubble of calm and optimism, and treatment problems discouraged me. It’s hard for me to write about the things that upset or discourage me, but I’ve promised to be transparent in this blog, so here I go.

So, yeah, Shani’s death is something I struggle with every day. I think of her often throughout my days, miss her whiny chatter, miss her snuggling at night. It took days to stop thinking I had to feed her twice a day, days to stop going to open the back door at her usual relieving times, days to stop crying at night. I have been accepted for retraining from Guiding Eyes for the blind, but that doesn’t mean Shani is being replaced. Each dog is a new beloved being, completely different and her own self. My heart will open up to the love for the new dog, but my heart will also always miss Shani, as part of me misses all the dogs who came before her. As for when I will meet NewDog, no idea. I’m someone who needs a specially trained dog, so I wait for GEB’s specialized training team to find the next furry friend.

As for treatment, remember that low dose of Cabometyx. Well, it was a bust, again! The first month was fine. I had the fatigue, some constipation, but otherwise, I felt fairly good. Still had some energy, when fatigue wasn’t visiting, but I felt better overall than I had with any previous treatment. And then, the dragons came, … uh no, I mean, and then, the second month of Cabometyx came, and everything went to hell.

Near the end of the fourth week of the first round of the meds, I started getting some mouth sores. Then early in the first week of the second round of meds, the hand and foot syndrome jumped into the mix and that was the end of that. It seemed overnight the foot sores came, two of the little buggers on one foot. I stopped taking the pills immediately, and I reported to Dr. Z, who also told me to stop taking the meds. I’ve been off the meds a couple weeks at least now, and other than feeling tired a lot still, I feel pretty well.

Oh, am I discouraged and frustrated. I’ve been doing treatment over a year now, and the only thing that showed some progress on the cancer makes me too sick to continue swallowing it down every day. What can we try next? Is there anything to try next? And what does the future hold? Even if we find a workable treatment, will it shrink the nodules in my lungs and send the cancer into remission? Will I be taking these poison meds the rest of my life, the cancer like a chronic disease that must be treated for the rest of my life? However long that may be. In the meantime, as kidney cancer can also spread to the bones and the brain, do I need to worry about it spreading somewhere else again?

Maybe it’s time I asked the hard questions. I’ve tried to stay focused on being confident and optimistic; that’s been my driving force through this whole year. But now I feel like my future is so confused and unpredictable, maybe I need to find out some truths from Dr. Z. It’s hard to ask those questions, hard to ask them with my beloved sister sitting right there, and with Doug, who is visiting, waiting back here for the answers. With these feelings of discouragement and helplessness though, it’s time to try to get the straight scoop. Also, it’s time to have a better conversation about what other treatments we can try. I like having a plan. I hate feeling like the world is all topsy turvy, with no direction or plan. I see Dr. Z on the 14^th of this month, so maybe I’ll have more info after that.

I also have to have my port flushed this Sunday. When they first called me to schedule this, I remember being half asleep, and I didn’t ask why I have to do this. I had to reschedule the appointment, and this time I asked. Apparently, the port has to be flushed with liquid every twelve weeks. If it goes longer than that, the port can seal itself closed, and then it has to be removed and a new one installed. Well, damn. I think I’m just at the end of the twelve weeks, so fingers crossed and all that. Of course, I don’t know why we’re not removing the blasted thing anyway. You know, since the immunotherapy didn’t do a thing for the cancer and only sent my arthritis wild. Yippee, ain’t life grand? So, I ask, to quote President Bartlett of the west wing fame, “What next?” Maybe I’ll find out on Monday.

SHANI, MY ANGEL DOG

JUNE 6, 2025

R.I.P. August 2015 to June 2025

I’m writing about this here, because Shani, my yellow labrador guide dog holds great significance in my journey through kidney cancer, and caring for her is something that helps me keep my focus outward and not always on cancer and various treatments. It’s fitting that Shani be represented here.

In February 2021, I was supposed to train with Shani, guide dog from Guiding Eyes for the Blind. I had been on the waiting list for 19 months. I have special needs in training due to my arthritis, fused knee, balance issues and slow pace. So, I’d been waiting, the longest I’d been without a dog since 1975 when I got my first guide dog. This was during the pandemic, and the various guide dog schools had to pull way back on normal services. I had no clue when I’d get a dog.

Shani, under a different name at the time, had been issued to someone else, but her person had become ill and felt it was best to return her to Guiding Eyes. That person’s field manager, AKA guide dog mobility instructor (GDMI), Melissa, was also my GDMI. She picked Shani up in December of 2020. Shani was over five years old, an age where no guide dog school would normally issue a dog. But everyone had to think outside the box due to the pandemic. Melissa thought this dog would be a good match for me and called me to discuss. I said I would like to meet the dog, and we arranged something for the new year.

In January, Melissa brought Shani up to my house. At this point, after 19 months of no dog, I had begun to wonder if I really wanted another guide. No dog poop in the yard, no dog food purchases every month, no dog hair. But it only took one touch on Shani’s soft coat for all that to fly out of my head! We met outside. When Shani met me, she started wagging, wiggling and bouncing. I was head over heels in love, and so was she. It was instant wholehearted love, and a solid bond from that moment. I harnessed her up and we took a walk to see if our pace and other aspects of a guide dog team meshed. We did! And we arranged to start training in February.

But I had to get my medical report in. So, I went to the doctor to have them fill out the medical form. I mentioned that I’d had some pain when I peed, and the doc did a urine sample. The form went off to Guiding Eyes, and training was able to begin.

In the meantime, the results of the urine sample came back, and we did another one. There was a large amount of blood in my sample. My doctor had me get an ultrasound, and then a CT scan, and then referred me to a urologist. He told me I had a mass in my left kidney, and they would have to remove the kidney. Thus, the diagnosis of kidney cancer. What this all has to do with Shani is that if not for needing that medical form filled out, I might not have know I had cancer for a long time. Kidney cancer has few if any symptoms. Shani most likely saved my life.

This brings us to now. Starting a couple weeks ago, Shani started peeing in the house. It was unbelievable as she’d never had accidents in the house before. I have magnetic screens on my back door, and she could go in and out to the yard whenever she pleased. I took her to the vet last week, and they did lab work including getting a urine sample, among various other things. The vet sent me home with antibiotics for the possible urinary tract infection and we hoped all was well.

But the meds didn’t seem to be working. She was still having accidents. On Tuesday of this week, June 3, 2025, my brother-in-law noticed that Shani came in from the yard and was bleeding from her vagina. She also kept squatting like she was trying to pee, but it was just blood. I called the vet, and we rushed her in.

It was the worst news possible. Shani had Transitional Cell Carcinoma, a terrible and aggressive cancer that is pretty much untreatable. Even if someone were to opt for treatment the dog would only live six months to a year longer. I made the most agonizing decision possible and told the vet that Shani and her comfort and well being were the most important things. We had to let her go. The vet agreed. Rosie and I were crying, even the vet was teary. I asked her to do the procedure with me there, so I could be with my girl. I told Shani that she would go to sleep and wake up in heaven with all my previous dogs waiting to greet her. I said that Bianca might want to teach her how to be mischievous, but that sweet Shani should not listen. She went peacefully.

Let me tell you some things about Shani. She was always wagging. Even at the vet’s on that last day, while she’s constantly trying to pee and just bleeding, her tail was going. She was very vocal. Someone might call it whining, but it was just her way of communicating. The only toys she liked were bones of various styles, no plush toys at all. She wouldn’t play with any other kind of toy. She loved to lie on my patio in the sun, and I had to call her back in on warm days, because that girl just wanted to sun bathe. She won hearts everywhere she went. She loved people, but she was my girl all the way, totally bonded to me. If I was down, worried, depressed about the cancer, when I’d go to bed at night, Shani who always slept on my bed, would lie as close to me as she could possibly get, giving me her love and comfort. She made every day of my life better and brighter and always gave me something to smile or laugh at.

I miss her so much. I’ve been sad and depressed since she left. It helps to know I did what was best for her, but that doesn’t stop me hurting. My heart aches. Every move I make around my house, I’m still thinking, where is Shani, still imagining sometimes I hear her paws pattering around. I expect to find her when I wake in the night. I still think that I need to get up in the morning to feed her. We who have guide dogs, are with our dogs 24-7. It takes a long time to break the habits, the routines, a long time to stop expecting the dog to be there, ready to go, to play, or to snuggle. I tell people who ask how I can get another dog after one leaves, that I am capable of loving more than one person, and the same with my dogs over the years. I try to explain that each dog has left a part of itself, its soul in my heart. Shani will have a big part of my heart. My girl who never made a mistake or needed correcting or broke the rules. My girl who made my life so much better just by being here. My girl, my angel dog.

WHOA, TOO MANY MEDS!

June 2, 2025

It’s been a while since my last update, and things have turned around somewhat here. It was crazy for a while. I can’t remember where things were with my last update, except that I was in a very low space at the time. As I titled this “too many meds” I’ll start there.

It seems I had developed another UTI, and my primary care doctor, Dr. R, prescribed some major antibiotics, because this was a particularly nasty form of bacteria. Well, the pills were huge, horse pills, the biggest pills I ever put in my hand. I knew I wouldn’t be able to swallow them. I asked if Dr. R could prescribe them in a liquid form or try a different antibiotic. He said he’d do the liquid but warned that it would cost more. How unfair is that? And yes, it did cost a hell of a lot more! But I have difficulty swallowing big things, not just pills. I have to cut meat into small pieces for instance, and I’ve been known to have a piece of a piece of bread lodge in my throat.

Along with that, I was taking the Prednisone Dr. Z had prescribed for the terrible arthritis the immunotherapy inflicted on me. And two weeks ago yesterday, I started the 20 MG dose of the Cabometyx for the cancer.

There were truly days I felt overwhelmed by meds. Each of them had to be taken at different times and had different rules about when, with or without food, and all the rest. Thank God I still have a good memory, and Rosie and I remembered things together. Cabo first thing in the morning, antibiotic liquid twice a day, different first of the day from the cancer meds. The Prednisone said to take at the same time every day with food, and since I started it around 4PM the first day, I had to start eating dinner early. Then I had to eat breakfast or a evening snack with the antibiotic, and of course with the Cabometyx, take that as soon as I get up with just enough water to swallow. Then wait at least an hour to eat or drink anything else!

My head was fair spinning from all the meds! Gun times indeed.

Now, the antibiotics and Prednisone are done, and I’m just on the cancer meds. Nice to have one tiny little pill to take once a day as soon as I get out of bed!

I had an appointment with Dr. Z last week. He wanted to know how the arthritis is doing. And at first, the arthritis was doing so amazingly well after starting the prednisone, that I could hardly believe it. I went from being barely able to use my hands, to back to pre-immunotherapy levels in a matter of two days. But now the Prednisone is gone, and my arthritis is not quite like it was from the immunotherapy, but it’s not my old baseline anymore. I’m still in an active flare up, and my hands/fingers, elbows, and shoulders are the worst hit of all. It’s very frustrating, but I’m working around it and refusing, as ever, to let the arthritis win. I’m stronger and far more stubborn than it is. Lol.

About the Cabometyx. I’m doing okay on this dose. I’ve got fatigue—when since treatment started last year have I not had fatigue—and sometimes a loss of appetite, but so far, so good. Rosie and I have been diligent about taking care of my feet, lotions and balms twice a day. I got some mouth sores after foolishly eating a hamburger with catsup on it, but those are better already. And mmm, was that burger good! I don’t have diarrhea, stomach pain or any of the other side effects I had with this med before. Of course, it’s only been two weeks, and I’d have to look at this blog to see how quickly I got foot sores last time. It’s the one side effect that scares me. Oh, and I’m not losing hair anymore! Yippee!

The current plan is that I will continue with this dose for the next months. I’ll get a refill on this and take the next full 30-day round, and then start the next one. Then I will see Dr. Z again, and we’ll plan a scan to see if this is doing any good. If it is, we’ll up the dosage maybe, or maybe we’ll up it only if it isn’t working. But whenever we up it, I’m praying and hoping that my body will acclimatize, and I’ll be able to handle the higher doses.

It’s important to know that all this treatment is unlikely to “cure” or to put the cancer in “remission”. This type of cancer doesn’t just go away. It’s rare even for it to go into remission. This may be something I have to treat the rest of my life. I hit the jackpot, as I was one of the 20 percent of kidney cancer patients whose cancer comes back after a full kidney nephrectomy. It’s also important to remember that though this is in my lungs, it is still kidney cancer, not lung cancer. It’s just that the cancer that started over four years ago in my left kidney, has now spread to my lungs. I don’t know what is going to happen to me farther down this road. I’m confident that God is in control, and He isn’t letting me walk this road alone.

To finish up this post, I’m pasting in a poem I wrote about the nodules in my lungs. I plan to publish this journal/blog, someday, hoping it can help or prepare someone else going through this, and I will publish the poetry I write during this time as part of this journal. This poem came as a result of the big nodule in my left lung sometimes pressing against my ribs. It’s got some creepy imagery, so be prepared.

THE CREATURE

I call it a creature,

The doctors call it a nodule,

But I know it is a creature,

It lives in my left lung,

Attached there, it grows, it feeds,

It’s a creature.

Parts of it move around in my body,

It began life in my kidney,

They thought they fixed it by taking the kidney,

But cunning, it hid, waiting for its chance,

And now it’s in my lungs,

Yes, it’s a creature.

Sometimes I feel it press against my ribs or my back,

It’s alive and it wants to grow farther into my body,

It’s a creature.

They try to pretty it up,

Make it sound not so bad,

using words like nodule,

But it lives, and it’s a creature.

It fights to stay,

It fights to move to new horizons inside me,

It wants to win against me,

It’s a creature.

It has smaller children in my lungs,

But the main creature is big,

It continues to grow, to feed, to move,

They still call it a nodule,

But I know, it’s really a creature.

Written May 23, 2025.

THE FOUR D’S

May 5, 2025

So, what are the four D’s? They are my emotions the last week or so and early this morning. Discouraged, Disheartened, Despondent, Despairing. Yes, that’s how I’ve been feeling. I give myself permission to feel these things during this time. I had a CT scan last week and met with Dr. Z this morning. more about that in a minute. First a little chat about the wonders of immunotherapy for a person with an auto immune disease.

My life, particularly since the second immunotherapy infusion, has been a nightmare. The arthritis is out of control. My hands are in such bad shape, that I can hardly do the simplest things these days. I wake up and my hands, fingers, wrists, are practically frozen, not to mention the pain. I spend the days constantly flexing my fingers and wrists, and my left shoulder. It hardly does any good. A month ago, I could squeeze both hands into a fist. Now, no way. My fingers hardly bend. In the morning I wrap my hands up in a heating pad, and that helps a little.

I’m a leftie, proudly leftie, and now I’m working on doing things right handed. I brush my teeth right handed now. I can hardly hold a fork or spoon, and my hand often shakes, with me supporting it with the other hand. The other day I was trying to open a package, and I couldn’t safely use a knife to open it. Yes, people, I’ve been using knives safely all my life, until now. I couldn’t open a can of soup yesterday, a can with a pull top. And it hurts so much to type right now!

I’ve been so afraid that I would end up losing most of my dexterity in my hands. The hands I use to help me stand from a chair. The hands I use to hold my guide dog’s leash and harness handle. The hands I brush my hair or teeth with. The hands I use to open cans of soup, or hold and pour from a gallon jug of milk. To quote Richard Dreyfuss in the movie the GOODBYE GIRL, “I am freaking petrified.”

That’s where things were when I stepped into Dr. Z;s office this morning. The scan results had come in just before Rosie and I left my house for the appointment, so I already knew the news wasn’t good. When Dr. Z walked in, those were his first words after hello. “the news isn’t good.” The largest lung nodule had doubled in size since the February scan. It is now 5.2 CM which converts to over two inches. The nodules have *never* grown so fast in the years I’ve been dealing with this cancer. I swear the immunotherapy super charged the arthritis and the cancer too! Dr. Z said no more immunotherapy, and those were the exact words I wanted to hear.

We have a new plan. We’re going to try Cabometyx again, but we’re going to do it differently. We’re going to start with the lowest dose, 20MG, and if my body can handle that, we’ll increase the dosage over time. The foot sores were the worst, though there were plenty of other side effects. The hope is that increasing the dosage slowly might make me tolerate it more. The Cabometyx is the only treatment we’ve done where the nodules actually started to shrink, so I really want this to work.

The doctor is also giving me a two week prescription of steroids to try to knock back this arthritis flare up. I’m praying this will work.

I’m not going to try closing with some positive feelings. I’m worried and scared. I’m in so much pain from the arthritis. If this plan doesn’t work, I don’t know what we can do next. Dr. Z isn’t a quitter, and I’m not a quitter either. But right now, my world feels bleak to me.

TELL ME ‘BOUT THE GOOD OLD DAYS

March 26, 2025

The good old days, of which I speak, are those not so good old days when I had regular arthritis flare ups, serious chronic pain and worried about losing more range of motions. And guess what? Those good old days have come back to visit!

Yes, I think I mentioned that I woke up the day after the first immunotherapy treatment with a JRA flare up. Well, every day has been the same. Some days are quite bad, with every joint affected and lots of pain in any movement. Some days are mild, noticeable, but easy to manage by just ignoring it. I never know what the situation will be when I wake up each day. I’m trying to manage it with little medical help. Ibuprofen helps some, but ibuprofen can cause bleeding, and the immunotherapy can cause bleeding as well. They only want me to use it sparingly, and only if I absolutely must. I didn’t realize how little trouble I had with the JRA anymore, other than the inconvenience of the loss of dexterity and range of motion after a lifetime of the damned disease. Now, I’m noticing the difference, because this is like it was in my childhood or young adult years. Frustrating.

And now, let’s talk roller coasters. Not the kind that races up and down hills on tracks at amusement parks, but the roller coaster of life these days. This past Thursday was a week since the first treatment. I woke up Friday with some fairly strong stomach pain. Not like what I experienced last November. That was the worst stomach pain I’ve ever had. But this was similar to some degree, running across my upper abdomen. At the same time, it also felt like heartburn, that acidy feeling. Nurse Laura told me to call if there was absolutely anything new. Was this new? Was it just a different rendition of the occasional stomach trouble I get? I didn’t know. Eventually, I did call the triage line, where they took the info and reported it to Dr. Z. He advised monitoring and if the pain got worse, go to the ER. Well, damn, I wasn’t going to do that, unless it became as bad as last November. Seriously? Go to the ER, wait hours upon hours, and be told to go home and take anti acid meds? Yeah, I decided to wait it out. By Saturday, it was definitely completely like heartburn, like I ate something that didn’t agree with me, and by Sunday morning, it was gone. End of the first roller coaster ride. Grab those safety bars!

In the middle of the night, Sunday to Monday, I woke up with a terrible pain in my left side. NOT MY HEART! It was located below my rib cage and above my hip. It felt muscular. It was bad, very bad. I could breathe but not take a deep breath. I could move cautiously, but every movement hurt. I couldn’t turn on my left side. I was freaked, definitely freaked. I’d never experienced anything like it. This wasn’t in a joint, wasn’t in my abdomen. I wasn’t sure I would be able to get out of bed.

At around 5:30 in the morning, I unconsciously took a deep breath and cried out loud from the pain. At that point, I yelled for Doug, who heard me, thank God, even though his room is at the other end of my house. I knew I could not get up on my own, and I was scared.

Doug came running—what a fantastic friend. I explained and asked him to grab the remote for my bed and raise me to a sitting position. I have one of those fun Sely beds with a remote to raise the head of feet. He raised me up, and moving that way, not using my strength, didn’t hurt at all. Doug helped me move my legs off the side of the bed, and then I put my arms around his neck, and he lifted me out of bed. There was no pain. Wonder of wonders; miracle of miracles.

I had a dilemma, because I had to pee, but I wasn’t sure I’d be able to get off the toilet on my own. When you’ve been best friends with someone for 26 years, there’s almost nothing you won’t do for each other. I did my business, and Doug came in and lifted me to my feet. Best friend ever! I did call Dr. Z’s office over this, because I just didn’t know if it was some weird muscle thing, or something to do with the treatment. Fortunately, he was the on-call doctor, and he said if it got worse, or affected my breathing more, call him back. I didn’t need to call back. I took ibuprofen throughout the day, and by bedtime, the pain was down to a light pain occasionally, and the next day it was gone. For that time anyway. Better grab those safety bars on your roller coaster car again.

The next day my stomach was on fire. This was burning. It was acid again, not pain in the sense I think the doctor means when he says call if I get stomach pain. I blamed this on the ibuprofen I took the day before.my system isn’t used to taking that much ibuprofen anymore. Before my kidney removal in 2021, I took ibuprofen regularly for my arthritis, and I took something like Zantac to prevent the stomach pain that goes along with lots of arthritis meds. If people don’t know, Tylenol does not counter inflammation, so it is not an appropriate med for arthritis. So, Tuesday was painful. I tried Zantac. I tried the nausea medicine Dr. Z had prescribed, all to no avail. In the middle of the night, I had to get up twice to throw up. ugh. Eventually, after about 24 hours of this, and vomiting my guts out, everything was fine and has continued to be fine. Hang on, there’s one more incident.

In an effort to keep my body as strong as I can, and to exercise against the negative effects of these flare ups, I started exercises classes with a company called Couch to Active. The owner developed this exercise plan to work specifically with blind people. There are personal classes and group classes. I had a personal session today, and when I got up from some things she had me do lying on the couch—which I’ve done in the past multiple times—I had a big old pain in my back, sort of by where I had that pain the other morning, but more toward the edge of my back. My coach was freaked out, thinking we’d done something wrong in the exercise. I told her about the Monday morning fun, and she thought maybe this was another manifestation of whatever was going on with my muscles in that area. We did some gentle closing things to try to loosen things up, and it did help. Sadly, yes, I took two ibuprofen and am just praying hard that it works right away, and I don’t get stomach ickiness again. I even took some Zantac right away too. Maybe that will help. The pain is already better, so maybe … I guess we’ll see.

So, life has been a big old roller coaster ride the last few days. I’ve had some quiet melting down, alone in my bed at night, stressed about all this, worried that I’m ignoring potential side effects or something, wishing hard that the arthritis would go away. Just from typing all this, every joint in my hands and arms are aching and stiff. I have to stop frequently to straighten and relax the joints, elbows, wrists and all. It’s one of the days I’m feeling down about it all and so tired.

Doug goes home tomorrow, but my wonderful sister moves in again. In the midst of feeling down, I can still feel blessed and thankful to have such a friend and such a sister. I’m so lucky!

THE FIRST INFUSION

March 14, 2025

Yesterday was the first infusion treatment. I was feeling quite anxious before, in the days leading up to the treatment, and on the day itself. Everyone around me was feeling quite anxious as well. The first two treatments I’d had either had so many side effects or didn’t work at all. Though medical types kept telling me that immunotherapy is so much easier to tolerate, and that most people don’t have a lot of nasty side effects, I didn’t kick myself over the anxiety and fear.

Rosie picked me up in plenty of time, and we headed off, my guide dog, Shani in the back seat. We found the place with no trouble, and parking was near the entrance. When we entered, there was so much noise, people laughing and talking, the place echoing everywhere. It ramped up my worries quite a bit. But that place wasn’t the infusion area. We went through a door, where blessed silence and calm prevailed. We checked in, and in a few minutes, they were calling my name to go back to the infusion room.

The room was a big open place with cubicle type areas, half walls on either side and a curtain for privacy. We walked down the long room, passing other patients, until we got to chair 20, my cubicle. There were two nurses and they had me sit in a relatively comfortable recliner type chair, and that’s where I stayed until time to leave.

Both nurses, Sandy and Cassie worked with me. I was impressed with how they did everything, because they verified each other, from accessing my port to starting the meds. Neither made an action or decision without the other’s confirmation. This made me feel safe and I started calming down.

The first step was to put a mask on my face and a drape over my chest, because they have to keep the area clean and sanitary to prevent infection. When Cassie inserted the needle into my port, there was just a tiny pin prick and no other pain or discomfort. As they prepared to start the infusion, they kept repeating the info to each other. “480 MG, 30 minutes, 316”, phrases such as those. They started the pump, and we were on our way.

They did have food there, drinks, everything from sodas to coffee and tea, even hot chocolate. The food ranged from chips and cookies to sandwiches. I had a coke, but I wasn’t hungry, so I didn’t try out their food. Rosie had water.

The atmosphere was calm and unhurried, other than various monitoring devices around the room beeping for things like batteries or infusion ending. Rosie and I talked the whole time. I was calm, not stressed out at all, and felt nothing as the meds infused my system.

One thing I was glad for was related to the dressings they used to keep the needle in place. They noticed that the tape used by the port insertion people had damaged my skin, even to an allergic reaction to it. My skin has been bright red, painful or itchy, with some actual damage, since I got the port. The nurses at the infusion center used materials for sensitive skin, and it was so much better.

Once my infusion finished, one of my nurses told me to stay for half an hour. They wanted to monitor me since it was my first treatment. They reminded me several times of various side effects and when to call my doctor about any, but they also kept assuring me that most people tolerate this treatment well.

At last, we were allowed to leave, and we wasted no time getting out of there. We made our usual Starbucks stop on the way home. I was feeling tired, worn out, mostly from the emotional roller coaster of the past days, and I went to bed fairly soon after reaching home. I got up to feed Shani, then went back to bed and slept all night until about six this morning. I already feel tired again, and I’m writing this around ten in the morning. *shrug*.

So far, I feel fine. None of the scary side effects. But sadly, I did wake up with a pretty major arthritis flare up. This was something the doctors couldn’t predict for sure, but something that was possible, since my immune system is already compromised from the JRA. It’s affecting my neck, shoulders, elbows and wrists. My leg joints, other than ankles, are artificial, so no problems there yet. This could be coincidence, but I’m doubtful of that. I’ll just have to watch it and hope it doesn’t get any worse than it is.

I have my first infusion today and will be leaving for that in less than an hour. i’ve been completely wrapped up in my head over this since last week, when I got the port. I feel overwhelmed and discouraged about it all. One treatment made me too sick to continue, and one treatment didn’t work at all. What will this one do? Will it affect my arthritis? The nurse told me to report “anything new” to Dr. Z’s office and didn’t go much in to possible side effects. Just take how I’m feeling generally healthy now and report new symptoms. Nice. Doesn’t really tell me much, what to watch for specifically, how to deal with anything that comes along. Oh well. Rosie will be here in about half an hour, so i’ll go for now. Not sure if I’ll update today, but hopefully tomorrow.