Tag Archives: kidney cancer

treatment days 4-7

24 Monday Jun 2024

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Day 4:

June 21, 2024

The fourth day started pretty well. I slept great, didn’t get up to 6:30 in the morning. Took the pill at 7:15. Once the required hour past pill time had gone, Doug made me a smoothie, a recipe we have that uses fresh strawberries, Milk and a package of instant vanilla pudding. Churned up in the Vitamix, it was quite good. I was hungry, and I felt comfortable afterward. Drank a cup of tea, and of course, the ever-present flask of water. I hoped today would be a no side effects day.

It’s now afternoon, and I feeling very tired. Ate a little lunch, some leftover potatoes, and my stomach is not feeling so good. I also feel hot, almost like a hot flash, but since those days are long gone, is this some weird reaction, or just a benefit of my tummy feeling all mixed up? Going to lie down and read to see if everything calms down.

Day 5:

June 22, 2024

I never felt really good yesterday. Slept a couple hours in the afternoon, didn’t eat much all day, and went to bed around ten. And that’s when the trouble began.

My stomach was not happy last night, not at all, not all night. I did doze off when I went to bed, but I woke sometime between midnight and 1AM, feeling sure I was going to throw up right there and then. My gut and my bowels and any other part of the digestive track were roiling. I felt miserable. Sitting up, I took deep breaths, switched to a well loved book to try to calm my mind down, and hoped everything would calm down and let me sleep. Nothing ever calmed down. Eventually, I got up and took one of the trusty nausea pills prescribed by Dr. Z. In an hour or two, the nausea faded, but in general I did not feel well.

I finally started to doze again sometime after 5AM, but suddenly, my guide dog Shani started whining, wanting to go outside. I wanted to ignore it, to go back to sleep and catch up. I didn’t though. Ignore a dog’s need to relieve at your own peril! And I was afraid if I fell back asleep I’d miss taking my pill, precisely at 7:15. I got up, took care of my dog and waited an hour to take the pill. As soon as I took it, I went back to bed and slept for around four hours.

Since getting up again, I feel generally okay, not 100 percent well, but not bad. I had a late lunch and am letting my body process it, hopefully quietly and with no fanfare. But I still feel overwhelmingly sleepy.

I know fatigue is supposed to be part of the side effects, and I’ve noticed I might be seeming to have a normal day, when all at once, I feel exhausted and in great need of sleep. I need to be able to give myself permission to rest when needed. My side effects so far don’t seem so bad, and my tendency is to think I’m feeling normal things, not chemo pill things. I’m not sure if that’s true or not. It’s part of why I am writing this treatment days journal, to track what is happening to me, so I can learn what is to be my normal for the foreseeable future. I will also discuss this with the nurse on our video call next week. I wonder if that process will be accessible.

Day 6:

June 23, 2024

To finish yesterday, it seemed all my body wanted to do was to sleep. After my horrible night Friday-Saturday, I went back to bed and slept a good four hours after taking the Cabometyx. Then I suddenly felt tired after feeding my dog and laid down again, falling asleep for about three hours. Went to bed at around 11 and again slept all night, until after 6 AM.

I felt rested when I got up. Too my pill, took a shower, and once my hour past pill time, I ordered doordash for starbucks. Doug had gotten me a doughnut yesterday, and I had that as breakfast. I marveled at how great I was feeling. A little vertigo here and there, but hey, stand still, take a breath or two and all is well. Am I really taking chemo pills? Possibly radio active pills? Such strict protocols for taking and disinfecting things, even more strict protocols if someone other than I must handle my meds? But yay, feeling good is a good thing.

And then noon or so struck and things changed. That sudden feeling of exhaustion crawled over me again. And now, the palms of my hands are kinda sore. As if I’d put them in hot hot water, or spilled super hot coffee, not enough to blister, but that hot feeling. If I touch my arm for instance, with the palm of my hand, my arm feels cool, but the palm feels warm. I need a sighted person to look at my hands to see if they are red as well. This is another potential side effect, one they warned me about multiple time, hand and foot soreness. This can become quite serious. No hot hot water, moisturize often, regularly. Don’t ignore this symptom. Did I mention possibly radio active pills a minute ago? isn’t this a sign of radiation? Surely, I’m imagining this?

Everything is just bizarre to me right now. I, who spent my entire life learning to avoid pain and strangeness in my body, due to my juvenile rheumatoid arthritis. I who had to ignore all these things, or I wouldn’t have been able to get through even one day due to the pain, stiffness and other fun things. Now I have to watch for the slightest changes in my body, have to be aware of the little things like hands that feel too hot, dizzy spells, fatigue, how my digestive system is working today. It’s overwhelming and so much against my natural impulses. It hasn’t even been a week, and I’m already tired of it all!

And yet, hearing from other patients or loved ones of cancer patients who have taken these very drugs, so far, my experience is downright mellow. How can that be? It may change as the meds continue to accumulate in my blood, attacking bad and good cells. It may stay the same. Too soon to tell, I guess. I have much to discuss with the nurse on Thursday.

Day 7:

June 24, 2024

Woke up this morning around 3:20-ish. Stomach was a mess, bad nausea. I lay there fighting it for an hour before finally getting up and taking a nausea pill. Of course, I didn’t go back to sleep. I stayed there until near six, reading a book, trying to keep my dog on her schedule. She knew I was awake and started whining for potty and breakfast way too early.

My hands seemed fine when I woke in the night, but now they are hurting again, a little more than yesterday. My neighbor said they weren’t red when she came to clean the yard yesterday evening. I wonder what she’d say today. I guess a message to the oncology office is in order.

Meanwhile, I wait 20 more minutes to take the pill and begin a new day of what’s going on with my body today.

I had the hand tenderness off and on today. Sent a message to the oncology office. Nurse Laura called me this afternoon to discuss. Dr. Z is concerned particularly about this side effect. They advise using luke warm water, moisturizing frequently throughout the day with the curel lotion, and let them know if it gets worse. I do have a meeting with the nurse, video meeting on Thursday of this week, then visit with Dr. Z next Wednesday. If the hands thing continues, they may want to see me sooner. This could mean either a dosage decrease, or a new medicine. I don’t want to do that. Fingers crossed that this particular side effect stays mild or goes away altogether.

Another day when I felt exhausted suddenly, practically falling asleep in my chair this afternoon. It comes on suddenly. I laid down after doggie dinner and slept for three hours or so. Now I feel wide awake. Oops!

The first couple days I took the meds, I seemed to have more of an appetite. Loss of appetite is a potential side effect. Now, the last two days, I don’t really feel hungry at all. I am eating and trying to drink enough water, but I fear I am falling down on the job. This morning, my friend Doug made me the best smoothie, with strawberries, a banana, milk, vanilla ice cream, and a packet of instant breakfast. Tonight, I had mac and cheese. All the dietary stuff says eat several small meals a day, but it’s hard to do that. Now I wonder if my lack of appetite is a side effect, or just my usual lack of interest in eating. Hmmm.

Treatment Days, 1-3

20 Thursday Jun 2024

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Treatment Days

Day 1:

June 18, 2024

I took the first chemo pill around 8 AM. With me being a morning person, that was probably way too late. Doug was in my bedroom with the two dogs. I was in my bathroom, cup of water ready at hand. I’ve kept the pill bottle in a special place and in its original box. Taking a deep breath, I opened the bottle, took out a pill, popped it in my mouth. And grabbed the water to swallow it down.

Then, I stood there, waiting. It seemed the whole world was holding its breath. Were the side effects going to burst out upon me, attacking at will? Would I feel anything? Notice anything? Nope, nothing. No weird feelings, no blasts of illness. No sirens and flashing lights. Okay, is that all there is? Leaving the bathroom, I decided to go about my day.

And that’s how it went, all day long. After an hour I ate breakfast, deciding to take the next pill a little earlier, gradually working it up until I was taking it closer to seven than to eight, because I’m always up with my dog by seven in the morning. I mean, I like breakfast and don’t want to eat it so late!

I felt fine all day, hyper aware of every single thing about my body, but all was well. The only thing was a little bit of diarrhea that night near bedtime. It was just one occurrence, nothing more. I slept like a baby that night, after not sleeping much at all the night before. Hey, maybe this won’t be so bad.

Day 2:

June 19, 2024

I moved the pill taking time up a little, as I’d planned the day before. Not by much. I understand about taking it at the same time every day. So, I took the pill and waited. I did not expect blasts, lights explosions of side effects or anything this time. But this time, I developed a headache. Not a bad headache, but a headache. Again, hyper aware of every single thing about my body. The headache wasn’t much. My watch has a heart rate app, so I checked it and my rate was pretty high. That worried me, so I laid down for a couple hours to rest, and everything calmed down. No other problems the rest of the day.

I’m being careful to eat small meals, drink plenty of water, moisturize hands and feet. I’m follow toilet flushing and disinfectant wipe protocol to the letter. Day 2, so far so good.

Day 3:

June 20, 2024

Took pill three a little earlier again this morning. Think I have it at a good time for every day. I’m going to set up a daily reminder on my Alexa device, so I never get distracted and forget to take this. A little dizziness and general weird feeling this morning, but it’s settling down.

I’m wondering if I’m just having a super easy time with these meds, or if they just aren’t doing anything at all, or probably more likely, if it will take a few days for the meds to really sink into my system, to accumulate in my blood and start attacking all those good and bad fast-growing cells. Will I then start having more side effects? They call these meds, chemo pills, so how can I have no side effects to speak of? It’s weird. I keep waiting for the axe to fall.

Approximately four hours later.

Well, now I’m having side effects! Why did I have to wonder why I wasn’t having them? Still not severe or debilitating, but … Well, nausea is the main thing today. Not vomiting, just feeling queasy. Not even enough to take anti-nausea medicine. Just enough to feel it and feel bad overall. My body feels like it wants to add to that problem in other but somewhat similar ways, but so far, not. Didn’t sleep much last night, and I’d love to go to bed, but I’m trying to stay up all day today. We’ll see. If this gets worse, I will go lie down, closer to the bathroom, and keeping my stomach quiet and resting.

Hours later again. Felt nauseated, or is it nauseous, most of the day. Have not thrown up or had any other unpleasant bodily uncomfortable actions. But I have felt like all that wanted to happen all day. Feeling tired, low and not very well right now. I’m going to eat some mashed potatoes, have more water, or maybe a glass of milk and then possibly go rest. If this is me on the third day, what will the fourth day bring?

NURSE LAURA, TREATMENT BEGINS

17 Monday Jun 2024

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NURSE LAURA: TREATMENT BEGINS

June 17, 2024

Today was my appointment with nurse Laura, a nurse practitioner in Dr. Z’s office. Per their request, I bought all the meds in, cancer and nausea and vomiting meds. Upon first entering, my blood pressure was a little high. I reminded them that last week’s was normal, and that I’m usually normal, but kinda anxious and agitated about cancer. They took the pressure again at the end of the appointment, and it was back in normal ranges. I need to dig out my talking blood pressure machine, because high blood pressure is a potential side effect of the meds, so I need to keep an eye on it.

Laura went over things in great detail. I was happy she gave me such parameters, so I can tell if something is beyond what could be considered normal. She said things such as:

“If you’re tired and take a nap and feel better, that’s fine. But if you are so exhausted you feel you can’t get out of bed, call us immediately.”

She talked a lot about mouth sores, warning me not to use any mouth wash that has alcohol, which many name brands do. She actually recommended mixing a teaspoon of baking soda in a cup of water and drinking that to help the mouth sores and to keep my mouth hydrated.

She also talked about the hand and foot side effect, something that can cause pain and redness in both. Apparently, it can become quite serious, so she recommends moisturizing the hell out of both hands and feet at least twice a day.

She talked and gave recs for vomiting, diarrhea or constipation, but I’ll spare you all the details on that. I have meds for nausea and vomiting, and she recommended what to take for the other two.

It’s important to know that these pills are basically chemotherapy pills. They are formulated differently from typical chemo IV meds, and this does work on kidney cancer. However, it does attack fast growing cells, and it can and does attack good cells along with bad cells. So, as with traditional chemo, I have to be careful about infection. She recommended masking up when I go out and frequent hand washing while at home. Also, due to the ingredients in the meds, she said to flush the toilet twice after I relieve myself and to use a bleach/disinfectant wipe on the seat and lid.

I tend to have stomach pain not quite frequently, but often enough, due to what I eat or drink, and I did mention this to Laura. She just said that I know my body, my baseline of how I generally feel, and if anything feels worse, or just not right, call them.

The oncology office had a direct line during normal office hours, so if I am concerned about something happening with these meds, a side effect that worries me, not feeling well, whatever associated with taking these chemo meds, I don’t have to go through the main call center, but I can reach Dr. Z’s office right away. This was a huge comfort. I mean, if you’re feeling ill, it’s no fun to wait on hold for a long time, or wait for call backs. Of course, if it’s after normal office hours, I still get the call center.

I had to have labs before starting the meds. Everything was within normal ranges except one kidney function test. However, considering I have only one kidney, that’s probably to be expected. If I don’t hear from anyone in the office today, I will start the meds tomorrow morning.

I will have a video appointment with nurse Laura a week from tomorrow, and then I have an in-person appointment with Dr. Z two weeks from tomorrow. It was a huge relief to know they are monitoring and following up so much, particularly during this first month. I will have to have labs again when the first month is over, and eventually CT scans and continued labs and follow up.

I meant to ask Laura about mental health support. I’ve been feeling fine, emotionally, since my venting last week. However, I expect there will be ups and downs ahead, particularly if the meds leave me feeling ill. It might be good to find online peer support or something. I’ll just have to see.

So, that’s the scoop. I start my chemo pills tomorrow. For better or for worse, Here I go.!

GETTING BETTER ALL THE TIME

14 Friday Jun 2024

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GETTING BETTER ALL THE TIME

June 14, 2024

Humming that song by the Beatles as I write. Amazing how a couple days can change my mood. It seems like venting as I did the other day helped me a whole bunch of help. I felt more positive the next day, and things are at least a little better for now.

I heard from the special pharmacy yesterday. They asked me a bunch of typical questions. I also asked if they participate in script talk, or if they could at least provide Braille labels. This med is too important to risk taking the wrong thing at the wrong time. The pharmacist said it could be done. They shipped the meds yesterday, overnight.

But early this afternoon, when I clicked on the tracking link in the email the pharmacy sent, I got the UPS site and a message saying no results. I was a wee bit freaked out, because my appointment with the “education nurse” is Monday morning, and I’m supposed to bring all three meds. But, presto, lo and behold, we checked for packages outside my door, and there they were! And in the bag with the box of meds was a very lovely Braille label! I haven’t put it on the med bottle yet; I’ll wait until the nurse sees it on Monday. But I feel jazzed just to have a damn Braille label for my very important medicine! Disappointed that the very large info packet isn’t in Braille. There’s still so much I don’t know, like what does this actually do. But I suppose at least a Braille label is something. Will we always live in a world, where something is better than nothing, but still can’t get accessibility for everything?

In other news, I ordered supposed “sun hats” from amazon. The weather is already so hot here, and if the cancer meds should cause me any fatigue, nausea, or other happy little problems, I don’t want the heat to add to it. I’m sensitive to heat. The info on the hats said they were made of straw. That’s what I wanted, a straw hat, a pretty straw hat, in a pretty color. I got the hats today, but if they’re made of straw, I shall, as the saying goes, eat them! Waaaaah. I want a straw hat! A pretty straw hat!! Lol.

Next update? Probably Monday after seeing the nurse. Will I be taking my first pill that day? I don’t know. They did say I’d have to have labs done before taking it, so not sure when this new adventure will begin.

I can’t guarantee future posts won’t be roller coaster style. I’m writing this journey, and I’ll be open with my thoughts and feelings, up or down.

Venting

12 Wednesday Jun 2024

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VENTING” FEARS AND DEPRESSION

June 12, 2024

I’ve only been able to eat a bowl of cereal in two days. I wake up crying in the night and can’t go back to sleep. I actually had the nerve to ask God “why are you doing this to me? Hasn’t lifelong juvenile arthritis with all that entails been enough?” I quickly apologized for that impertinence! But the point, the thought the terror remains. Why did this have to happen to me?

I know I seemed positive after my appointment on Monday, but I do tend to blow off the negative feelings in public. I also didn’t have the rest of the story. Yesterday, I got a terse note from someone at Dr. Z’s office, explaining next steps. One of the reasons I have to wait to get the meds is that they come through a mail order pharmacy. Once I hear from them, I am to call for an appointment with the “education nurse” at the oncologist office. In the meantime, Dr. Z prescribed two meds for me, and I am to bring those to the education appointment with me.

I went on to check out what notes Dr. z wrote about me in his after visit area of my appointment info online. He did say some very nice things about me, warm, positive, friendly, all very nice, and how I generally try to behave. But then I read these words when describing my cancer. “incurable, but treatable.” Incurable but treatable. This has set me on a tizzy of fear, anxiety, and nighttime insomnia and tears. He’d implied during the appointment that I’d be taking the cancer meds forever, but I guess I hadn’t really let that become reality. Truly, forever? Doesn’t this stuff go in to remission, ever? Do I have to take potentially deadly and expensive meds for the rest of my life? Having looked up info about cabometyx, and the fact that even before I’ve had one pill or even a breath of side effects, my oncologist is prescribing nausea and vomiting meds to combat those side effects, yell yeah, I’m in a tizzy. In a panic, frantic and seeing my future as a dim unhealthy life.

People will probably comment that I’m making too much of this or having ridiculous emotional reactions, but if you’ve never stood by in helpless agony, watching someone you love die bit by bit from cancer and the treatment for that cancer, you can’t understand the stark terror I feel right now. I don’t want that to be my life! I don’t want those who love me to have to stand by in helpless agony and watch me go through it, wishing with everything they have that they could just do *something* to ease things or make them go away. Until a person wears either variety of these shoes, having it, or loving someone who has it, you just can’t understand. That’s a good thing overall, because I would never wish that on another human being, ever.

I don’t know what to do about all these feelings, except to write them out, expel that tangled knots inside me through my words, words that in one way or another have been my way of dealing with the worst things. I have never been able to write about Dad’s cancer and ultimate death, but hopefully, I can write about mine. Yeah, Father’s day is coming up, and that may not help my frame of mind right now, but I think I’d feel all these things without that piled on top.

I’m afraid for my future, and I’ve never really felt that before. I’ve been hurt, broken-hearted, mourned losses to death and losses of romance or friends, but even with my juvenile arthritis, I’ve never felt lost and helpless about my physical well-being. My folks and my doctors taught me how to handle my arthritis from childhood, and my life’s goal has been that it will not beat me, that I will, as I say with gallows humor, will walk into my grave, on my own two feet. I can’t find that attitude about cancer, incurable but treatable cancer, not yet. I just find my brain, my feelings, whirling round and round in a never-ending circle of fear and worry. I wish my doctor had a better bedside manner and would have taken time to reassure me. I wish I wasn’t playing the waiting game again, just waiting to hear from some unknown pharmacy, and then be educated. I wish; I wish; I wish … so many, too many things.

I’m scared.

Treatment Plan

10 Monday Jun 2024

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TREATMENT PLAN

June 10, 2024

I have a treatment plan, but not yet the actual treatment. I would estimate that Dr. Z probably stayed with us about ten minutes this morning. But the rest of the explanations, warnings and instructions will come later.

The first thing we asked was for him to explain the results of the biopsy. My sister was correct in thinking it was about the markers that tell the difference between types of cancer, in my case, the difference between kidney and lung cancer. Mine is definitely still kidney cancer.

We discussed three treatment options, immunotherapy, targeted oral meds, and nothing. Dr. Z and I were 100 percent agreed on all three: no immunotherapy due to my JRA, no just sit and do nothing, try the oral meds. It was pretty cool, because he had this form on the computer where he’d enter my type of cancer, then the type of kidney cancer, my age, my health insurance and a bunch of other things. He did mention the name of the meds we’re going with before doing the form, and it was one that the form suggested. My insurance is medicare, and the top choice was one that the doc referred to as “not in favor” anymore. Not as effective as it should be. I told him to pick the one that would work for me. He also told me that there is financial aid for things like this. My sister looked up the med later and saw that medicare does cover it, but maybe it will not cover the whole cost. Not sure at this time. Side effects include mouth sores, fatigue, nausea, weakness, weight loss, and so forth. The ones he emphasized the most were the mouth sores and the fatigue. I remember Dad’s mouth sores, and how he drank ensure during the chemo days. Ensure, here we come!

I did not walk away with a prescription, or one called in to my pharmacy, waiting to deliver it to my door. The drug has to be compounded, made for me, and then it will be delivered to me in person. When it’s ready, a nurse practitioner will call me to go over all the info I need to know while taking this into my poor body. This is something I will continue to take from now to who knows when. I will continue to have regular CT scans and blood work to check the progress of the treatment, and of course what the meds are doing to my blood and all that fun stuff.

I haven’t looked up the drug myself yet, but I’m sure I will in the next day or two. The only thing we saw in terms of dietary restrictions were no grapefruit and no grapefruit juice. Not hard since I don’t eat or drink grapefruit! By the way, the drug is called Cabometyx. Isn’t that a hell of a name? Where do they come up with these? Couldn’t it be something cute like CANCER BE GONE? Lol.

So, until I hear from Ms. NP, or perhaps Mr. NP, I will be playing that hurry up and wait game again. Remember that game. Oh fun. And much as I hate answering my phone, I’ll be jumping to answer it for the next little while!

THE RESULTS, NOW WHAT

30 Thursday May 2024

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THE RESULTS, NOW WHAT

May 30, 2024

Well, I got the results of the biopsy, and as I said in the title, now what? It’s definitely kidney cancer that has spread to my lungs. It’s no longer a nodule; now it’s a tumor. The largest tumor, the one from which they got the tissue for the biopsy, has already grown four more millimeters. It is now 1.6 centimeters, a little over half an inch in US measurements. There were a lot of things in the report I did not understand, lots of terminology I couldn’t find when I tried researching it. My sister thinks it’s about markers that determine the tumor is kidney cancer, not lung cancer. That’s important in regard to treatment options, but for me it means little.

I thought I was absolutely prepared for the results. I thought I expected it to be kidney cancer. Somewhere inside, however, I must have had a tiny bit of hope that I was wrong. I felt the world just drop away, like going down a super steep hill on a roller coaster. I did feel shock and terror, and I was surprised to feel those things.

My friend Doug and I spent some time on the web site of the American Cancer society, looking or treatments for kidney cancer. Chemo and radiation don’t work on kidney cancer. Due to my JRA, immunotherapy isn’t necessarily an option, as when it sends the immune system in to warp drive, it can also send the arthritis there as well. I looked at what they call targeted oral meds, and I was again shocked by the potential side effects. Everything you can imagine: nausea, diarrhea, dizziness, weakness, weight loss, changing hair color, mouth sores, hand and foot disease, high blood pressure, swelling in legs and potentially other areas of the body. Truly, I felt sick to my stomach and so scared. It might not be chemo in the technical sense, but the side effects looked exactly like what my dad went through with his lymphoma and chemo 27 years ago, right down to the hair color change and the mouth sores. I’ve always felt the chemo killed my dear father every bit as much as the cancer. I’m afraid of these meds, afraid of being alone going through this, afraid that with weakness and dizziness, I could slip on my hard wood floors, or getting in and out of my shower, or even trying to get out of bed to go throw up when necessary. I’m afraid of collapsing and not being found by anyone for a long time. I’m afraid of well, whatever comes in to my mind! I’m not generally fearful or nervous. I do stress out over money and things like that, but not really afraid. But now, I am afraid.

People have been supportive for the most part. Some people say be calm, be strong, be patient until you meet with your oncologist. Ha, laughing humorlessly. It’s so eaqsy to say that, when it’s not their cancer. If I have to go through fear and uncertainty, anxiety and stress to process this, then that’s my right and it’s okay. I’m giving myself permission to feel what I feel. I give myself permission to be true to my own self and allow myself to react, even if it’s just inside or here in this journal. Sometimes, I find I want to hold those feelings close, so as not to burden my loved ones. But damn! I have cancer, cancer that must be treated with meds with terrible side effects. It’s not going to do me any good to pretend I don’t feel anything. I’m not sleeping well or eating well. Even though today I feel calm, inside there’s this ball of terror waiting to get out!

Thoughts on my Cancer

02 Thursday May 2024

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Thoughts on My Cancer

May 2, 2024

I’m sitting here today, drinking a latte and contemplating my cancer. As it has spread from kidney to lung, it is now stage four cancer and considered extremely serious. I have pain under my ribs, from the left lun area, I guess. It’s not extreme yet, but I grew up in pain and have lived with chronic pain all my life. I tend to ignore pain and almost not notice it. But I notice this. It’s not constant, but it’s more there than not, whereas two months ago, it was not there more than it was there.

It’s scary to think of having stage four cancer. When it was kidney cancer three years ago, hey presto, do a quick little surgery to remove a sick kidney and go on our merry way. It was stage three then, and now it’s spread and it’s stage four. Every time I hear of stage four cancer it’s a serious thing. I’ve looked up info on my type of cancer. No, not on worthless, meant to terrify internet sites, but excellent info and books on kidney cancer. And I’m, “freaking petrified” to quote my favorite movie, character Elliot Garfield as played by Richard Dreyfuss in THE GOODBYE GIRL. Knowing how few treatment options there are for me, few as in one treatment, I’m yes, freaking petrified. I can’t help it. I am staying as positive as I can, and I’m trying to keep busy—yes, actually writing again—but I am a bloody human being with bloody human emotions and I’m just plain damn scared.

I watched my dad die slowly, painfully, extremely agonizingly painfully, and died partly in my heart when he left us forever. No, it’s a different type of cancer, but when you realize you have stage four, you think of all the people you’ve know who haven’t survived it. Dad. Jim from the choir I was in at a church in San diego, and young twenty something guy who died of liver cancer in a couple months. And on and on it goes, the noise constanly running around in my head, like a hampster on a wheel.

I HATE THIS!!!! Why me? Why God, why me? Wasn’t it enough to be blessed from birth with JRA? Did this have to come along as well? I scream that in my mind and heart, even while I know this has nothing to do with God. As I said, I am a bloody human being, and we have bodies that don’t stay healthy forever and ever amen. I allow myself to have these periods of fear and anger, because it’s not healthy to conpress and hide my true feelings, even from myself, as I usually do. It’s okay to feel these things, and I am giving myself permission to feel them and express them. It’s why I’m writing this journey in a blog.

Anyway, that’s where my head is today. A week from today is the biopsy, and we’ll take it from there. One day at a time. Here I go.

ALL THINGS NEW AGAIN

03 Tuesday Jan 2023

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All Things New again

January 3, 2023

I’m not one to celebrate a new year. It’s just a new date to me, and since the computer and the phone and the echo devices update their date features automatically, it isn’t much of a thing for a new date anymore. But the combination of 2021-2022 has been so up and down, I’m glad to see a new year for once. Who knows? I’ve always thought of the number three as a good number, so maybe 2023 will be a good one.

As I’ve been quite the slacker in updating my blogs—this one and my author one—Here are some highlights of the last two years. I’ll probably skim some of it, but some might be long. Grab your favorite beverage and snack, pull up a comfy chair, turn on the fireplace if you’re in cold weather, and sit back and enjoy the ride.

2021

CANCER

In February of that year, I was diagnosed with renal cell carcinoma, kidney cancer. I often tell my guide dog, Shani, that she saved my life. I had to do a physical and that’s when we discovered something wrong. Turned out I had a large tumor in my left kidney. It was stage 3.1, which is close to serious. I was born with a chronic and painful disease, and so I have learned to ignore pain and tend not to worry about aches and pains in my body. I’d ignored the pains I’d been having in the kidney area or the weird issues with going to the bathroom.

I had surgery in April to remove my left kidney. The surgery went well and they believe the surgeon got all the cancer. Of course, I have to have CT scans every few months to check, because kidney cancer can spread to unusual places. I’m almost two years from surgery now, and mostly, I feel confident about my prospects. I do have moments of fear that the cancer will come back. Kidney cancer can’t be treated with chemo, and because of my auto immune disease, I can’t join any drug trials.

And yet, with all the fear of the cancer, something amazing and wonderful came out of it all. The day I was diagnosed, after telling my close friends, Doug and Joylene, I longed to hear my sister’s voice. We had once been best friends, but after our dad died—of cancer also, though a different variety—I had been in such deep grief, and I ran away from family. I guess I felt that being around them, without Dad, would be so painful, I couldn’t handle it. It was a cheap, nasty move on my part, but I wasn’t really thinking coherently about it. There’s more to it, a very bad relationship that made me want to hide from everyone who loved me, but I’d let my closeness to my sister especially and my brothers and my mom in all but biology, slip away. I’m the oldest, and I sure didn’t act like a loving giving older sister. I feel guilty to this day. Still, I called my sister that diagnosis day, and we clicked again instantly. Her first reaction was to come and be there for my surgery. One of my brothers did the same. They both came, and I was so thankful to have their love and support. The cancer brought us back together, and I’ll never let us slip apart again.

In July of that year I retired from my job, permanently. I am happily retired and don’t miss the grind at all. I’ve never regretted making that decision.

Also in July, the big thing, the great thing, the dream that I finally brought to life, I published my first novel, Haven. Haven is a romance, set in a fictional town in Colorado. The main female character is blind, and she has just suffered a terrible loss. In a custody battle with her ex-husband, the judge awarded full custody to the ex, because he didn’t believe a blind woman could raise a child. Sadly, this has been a serious problem for many disabled parents, and when I hear about it, my heart is broken every time. My male lead is a widower, a pastor of a small church, though I can’t say the book is religious fiction. It’s just how he appeared to me when I thought of him. I took my characters on a journey to healing, finding love and maybe resolving other painful issues outside the relationship. It’s available in paperback and kindle from amazon and from audible as well. I’d dreamed of doing this since I was around nine or ten, and at last, it had happened!

2022

Our year just past was a terrible and wonderful year for me. let’s talk the wonderful stuff first.

The reunion with my sister, and good friends moving back to California, started me down the road of thinking about moving back home. Getting cancer left me with a soul desire to be a part of my family again, to laugh and cry, to enjoy just talking and being together. I wanted to come home. In February, I flew to Monterey to stay with good friends.

During my visit, my sister found houses for sale in the city where she lives. I looked at some, and eventually, I bought a home in that town in the central valley area of California. It’s the most beautiful place I’ve lived in my adult life. It’s got three bedrooms, two baths, a dream of a kitchen, a laundry room I call a butler’s pantry, because not only does it have the requisite equipment, but it has a sink, and lots of cupboards! I have a beautiful back and front yard, with flowers and trees, and even a small putting green. I’m in a quiet area with wonderful neighbors. Imagine that! I don’t think I’ve ever gotten to know neighbors before, but here, they are friendly and helpful, and it’s great to get to know them. The whole town seems welcoming. Why, I even had a personal meet and greet with a mayoral candidate, who came to my house and discussed his ideas for the town and my thought on needs for disabled people here. We’ll be meeting again sometime this month. I’ve had a yen to be more involved on the city level, for a long time actually, and here in this quiet little town, it may be happening. I live less than a mile from my sister and see her often. We next nearly every day, whether or not we get together. I love her husband very much, have been getting to know my nephew/godson and his wife and baby, and life is joy after joy. I’m so glad I made this move!

And now, Friday evening, March 25, 2022

Friday night, that late March evening, was just a normal evening. I was still with my friends in Carmel. I was in my room, doing something on the computer, and my friend was upstairs in her room reading. It was a normal night. My cell phone rang. It was from the 206 area code, and I had a funny feeling I should answer it, but I didn’t get to it fast enough. I listened to the voice mail, and I felt like I was going to throw up. You’ve read that line about your heart sinking and your stomach going in to knots and various other uncomfortable things? Well, I can’t find a better way to describe it. The call was from a trauma center in Seattle. I called them back and here’s how it went.

“Hello? This is sherry Gomes. You left me voice mail?”

My hands were shaking. My heart was beating out of control, Tears were already gathering in my eyes. My best friend in the world, Doug, had gone out to dinner that night, walking to and from the restaurant with his guide dog. Could something have happened to him? It was the only thing I could think of, since he is the only person I know about whom a hospital might call me.

“Yes,” the hospital person answered. “We need the contact information for the legal next of kin for Douglas Payne.”

I did start crying then. Was she saying what I thought she was saying? Those words, legal next of kin, were ominous. Bringing up the worst my imagination could conjure. Oh no! Was Doug gone? Why did they need legal next of kin. I was not the legal next of kin at that time.

This all raced through my mind in an instant, as I fought off the nausea and tried to keep my voice under control.

‘Yes,” she said again. “We need to be able to contact his father.”

“You can’t contact him. He is ninety years old and is in the hospital. I don’t have the contact info for his brothers but I can get it. Please tell me, what happened to Doug.”

“All I can tell you is that he was brought here by paramedics. We have his guide dog too; the police brought him. We need someone to take care of the dog too.”

Intubated? Do they just need permission for that legal next of kin, to pull the plug? What the bloody hell is going on?

They told me again, most forcibly, that they needed the contact info, and I promised to get it.

After I hung up, I flew out of my room, calling for my friend, Joylene. I had let go and I was crying and shaking, still feeling I might throw up over everything. Finding contact info for Doug’s brothers and dealing with taking care of his dog, would give me a way to focus my mind and push the fear away a little bit. We spent the next two hours trying to find cell phone numbers for the brothers. With everyone having cells now, you can’t just look them up easily. I found several disconnected numbers. I left voice mail on a few other numbers, hoping somehow, that one of those messages would get to a person who could get it to one of the brothers.

While waiting to hear back, I called Guide dogs for the blind, the school where Doug got his dog. I told their emergency night person that Doug and his dog had been in some kind of accident, but that the dog seemed okay. Could they get a local puppy raiser to pick the dog up from the hospital? The hospital isn’t equipped, nor should they have to take care of the dog.

Soon after that call, I heard from one of Doug’s brothers. One of my voice mails had gone to his ex-wife’s number, and she’d gotten the message to him. The police had also found him and let him know. He gave me his number and gave me their other brother’s number. He also told me what had happened to Doug. He had been walking home with his dog. He was on the sidewalk. Can I mention that again, in all caps? HE WAS ON THE SIDEWALK. A woman, pulling out of a driveway, was trying to turn on to the busy street. She saw a break in the traffic and without looking both ways, she pulled out, hitting Doug and his dog, throwing Doug several feet in to the street! Remember those words, on the sidewalk? Doug had skull fractures and had been taken to the trauma center. His dog was not hurt.

The brothers told the hospital to give me access to any information about Doug’s condition, and I was able to get updates from the hospital freely after that.

I was so afraid. Doug and I have been friends for nearly 24 years. He is my soul mate, my brother, my pal, my bosom buddy. He took three months out of his life to stay with me and help me recover my my kidney surgery. He’s been there for me time after time again. I can tell him any secret, any fear, any dream, and I always know he will be there by my side, as I will and have been for him. I was so afraid I was going to lose him. How do people recover and be normal again after several skull fractures? I couldn’t sleep. I couldn’t eat. Every day, that first call in the morning, I held my breath, clenched my hands together and hoped and prayed.

It took time, by day by day, he did get a little better. When I told my sister what happened, her response was, when do you want to go up there to see him. Isn’t she amazing?

This post is already so long, so I’ll skip the description of the trip, except to say we did go, and spent a few days up in Seattle. It was a good trip, a scary trip, in some ways a crazy trip, and a fun tale to tell. So, hopefully, in a few days.

Doug is still recovering. He does have permanent hearing loss and other issues, but he’s still Doug, and that’s all that matters to me. He spends a lot of time here, and hope this is a restful place for him to be.

By the way, the woman who hit and seriously injured my best friend, the woman who changed his life irrevocably, had no insurance, no property so no way to sue her for pain and suffering. She got a slap on the wrist for no insurance, and my friend has serious physical changes that will affect him for the rest of his life. It’s not fucking fair, and I’m infuriated all over again, every time I think about her. Thankfully, Doug just wants to move on with his life. He doesn’t want to hold on to the anger. I do that for him.

2023, All Things New

And here we are at this new shiny year. Doug is doing well. As far as I know, my cancer has not come back. I’m rebuilding family bonds and so happy in that. I cherish every moment I can be with those I love, because I so nearly lose of those, and because the new ties with my family are precious to me. What do I want for 2023? I hope to finish the sequel to Haven. I hope to get a little healthier. I hope the cancer doesn’t come back. I hope I find ways to keep busy, to give to my community, to make new friends in this new area, to keep growing, learning and changing. But I don’t resolve to do any of these things. I hope to do them, and that is the best I can give. Hope is a most important things in my life.

Here’s to 2023! May it bring us peace.

surgery and then

16 Sunday May 2021

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I know I haven’t kept up with this very well. Recovery has been slow and exhausting. i’m almost four weeks out and still in a lot of pain. Makes sense when you consider that they cut into my gut to remove the kidney. The muscles and such will take a while to heal.

But then, there’s the pathology report, and it isn’t happy. Looks like the cancer has spread outside the kidney, and I’ve been referred to an oncologist. This is my greatest fear. Having watched my dad die slowly and painfully from cancer back in the 90s, I’m afraid of chemo, afraid of going through this. But my appointment isn’t until the 26th of this month, so there’s not much I can do for now, but take things one day at a time.