My Cancer Journey

26 Friday Apr 2024

Posted by in Uncategorized

≈ 2 Comments

My Cancer Journey

I know that if you’ve been reading this blog, you’ve read about my journey with kidney cancer. But here’s a brief rundown of the past, and then details on the present and future.

In 2021, I was diagnosed with kidney cancer. In April of that year, they removed my left kidney, as the tumor was quite large and was stage 3.1 cancer. If that had been the end, nothing more would have been needed. I could expect to get periodic scans to check if the cancer had spread. It could have spread around the surgical area, into the adrenal gland on that side and so forth. Kidney cancer can also spread to the lungs, brain, bones, and probably other places I can’t remember right now.

For two years, I had a CT scan every six months, and things seemed to be going well. I was hopeful. Last April, that would be April of 2023, my oncologist was hopeful that if things stayed the same, I could stop the scans this year. But I noticed new info in the scan reports and was concerned, though I tried not to think of it. There were nodules in my lungs that no scan report had mentioned previously. I realized this could just be that the picture was showing things it hadn’t before, or a new person reading the pictures and interpreting them differently. I read up on what they called “tree in bud” nodules, and to my surprise, I saw that they could be a result of my JRA, juvenile rheumatoid arthritis. My new oncologist wasn’t concerned, so I locked those nodules away in the back of my mind and went on with life. Next scan would be October 2023. And that’s when everything changed.

This time, the scan report didn’t appear on my provider’s web site before I met with the oncologist. My little nodule, at least one of them as there are several in both lungs, had grown from two MM (millimeters) to seven MM. I was in shock when he told me this. My sister, Rosie, who accompanied me to the appointment was shocked too. The oncologist, Dr. Z, said that the thing was still too small to do a biopsy, so we’d schedule another scan in three months this time, and he sent me home.

A word about Dr. Z. I lived in Colorado when I was diagnosed originally. My oncologist was part of the Rocky Mountain Cancer centers and was very good, fantastic even. He spent a lot of time talking to me. He explained that kidney cancer doesn’t respond to chemo or radiation, and that at the time, I wouldn’t qualify for any drug trials, as they were immunotherapy, not recommended for people who already have auto immune diseases. We also talked about whether or not I could take meds for my JRA flare ups, if I needed to change my diet with only one remaining kidney, and he patiently answered all my fears and questions. In 2022, I moved back to California and live less than a mile from my sister, in a small city. I have a great primary care doctor, but all the specialties are in another larger city, about 45 minutes to an hour away. My sister is also my medical proxy, so I’m glad to have her at all my appointments. She knows my wishes, she helps me remember things I want to ask, and she helps me vent it all out, if I’m freaked. So, DR. Z is about 45 minutes away. When we meet, he barely spends five minutes with me, and it’s difficult to get him to sit still long enough to answer questions! We drive a 45 minute route, my sister has to miss some part of her work day, and he can’t bother to spend more than five minutes with me, if even that much time!

Back to our tale. In January of this year, I had my next scan, and the “nodule” had only grown one MM this time. Still too small to do a biopsy. Dr. Z said it had to be at least ten MM. “Let’s do another scan in three months,” said he, as he whisked out the door. So, it was another three month wait.

At this point, all I wanted was for the damn “nodule” to grow big enough to do a biopsy. This game of waiting three months at a time, then another scan, then another five-minute meet with the doc, and then back home to start all over again, was driving me crazy. Even as a child, my doctors were honest with me about my JRA and my blindness. They taught me how to handle my arthritis. I grew up expecting to be able to handle medical things that came up, because I’d learned and I’d handled what I was born with. This hurry up and wait thing with the cancer was frustrating, to say the least. I just wanted the thing to get big enough to do the biopsy, so we could plan the next steps, the path forward.

Two weeks ago, I had the next CT scan. My little friends—shall we call them tumors now—had definitely grown. The big one in my left lung was now twelve MM, big enough to do a biopsy. We met with Dr. Z Monday of this week, and he said yes, we can biopsy now. When I asked what the biopsy procedure would entail, he brushed it off, saying things that made it seem it would be simple, numb me up a bit, take a needle to my lung and grab some tissue. That wasn’t quite the facts. Hang on, we’ll get to that. We also briefly talked about treatment following the results of the biopsy, oral meds or immunotherapy. I asked about the immunotherapy affecting my JRA, and he said that he wasn’t really sure if it would affect it or not. For me, since I have the JRA in every joint in my body, the idea of immunotherapy bringing that thing to life and not being able to take meds to combat the arthritis is a terrifying thing. How much range of motion would I have left? I’ve already lost so much after a lifetime of the damn disease. The scan report had also mentioned something about the lymph nodes in the lungs growing, but the doctor thought they hadn’t grown enough to worry about, not yet. Home we went, and I waited for a call from the radiology people who would be doing the biopsy.

I got the call yesterday, and the procedure is far more involved than the words of Dr. Z had indicated. It will be a four to six hour process, from checking in to going home. I’LL ARRIVE AT 7AM, get checked in, eventually meet with a doctor. I will be sedated, but it won’t be general anesthesia. They told me I would technically be awake and breathing on my own. This is a good thing really, because with the way the JRA had affected my range of motion, they can’t intubate me with tubes down the throat. It has to be through the nose, and I shuddered at the idea of having to start explaining this over and over again before the procedure. The actual biopsy process will begin around nine and last 45 minutes or so. I expect there will be some recovery time, and they will do a chest x-ray afterward to make sure everything inside is okay after the biopsy procedure. Then I get to go home. Before I told them I am blind—which you’d think they would have seen in my file—they told me to be sure to bring someone to drive me, because I couldn’t drive for 24 hours. I guess I will be pretty sleepy for the rest of that day.

That’s where I am now. The appointment is on May 9. My sister will take me, and Doug will be flying down to take care of my guide dog, Shani.

Okay, so what the hell am I feeling right now. Somehow, the biopsy has made this more real than it’s been since they removed my kidney three years ago. I’m freaked out. I’m nervous, scared. I’m anxious. My sister is away on a trip, and Doug isn’t coming for a week and a half. Today, I feel so very much alone. I miss the Hegels, particularly Joylene, like I can’t even express in words. The night before my kidney surgery, all their family were in Colorado too, and they came to pray with and for me. There is no one to do that today, or the day before this biopsy. I don’t know what the treatments will do to me. Will I be ill from the meds? Will I have to have multiple scans and lab work to check how the meds are working or affecting my body? What will the follow up be? I wanted to *do* something, and now we are, but there are still so many questions. People tell me to be strong, and I am, damn it, but I’m human and allowed to feel these things. They tell me that people with cancer are surviving and living full lives more than ever these days. Funny, they were saying that almost 30 years ago, when my dad died of lymphoma. It doesn’t matter that I know that in my head. This is happening to me! I’m experiencing it, and it’s frightening. I wish I could have a good old-fashioned cry about it all, but I can’t seem to cry anymore. I didn’t really cry over the initial diagnosis three years ago, and I can’t seem to cry over this. Just feel all the feels. I wanted to make bread this weekend, pound out my feelings on the dough, but the instacart person didn’t bring my yeast. LOL.

Between now and then, I’m going to write and get my house in order, get the house cleaners out to do a thorough cleaning so I don’t have to worry too much about that for a while. I am incredibly determined and stubborn, and I want to focus all my energy on beating this damn thing, if I can. I don’t say that to negate all the things I said about my feelings. It’s just that feeling all those complicated scary things, does not negate my general personality, or the way I’ve always handled the things that hit me, particularly physical things. I’ve spent my life committed to never letting my JRA control me. It’s worked on me, it’s diminished my dexterity and flexibility, it causes me pain every single day, but it has never beaten me. I don’t know if every ounce of my strength and courage can beat the cancer or not, but I will give it the battle it deserves. I know God is with me through this, and that gives me a comfort I need. It also lets me know it’s okay to feel all the fear and anxiety. One day at a time now, one step at a time, one minute at a time. That’s all I can do.

WHAT IS A MOTHER

08 Thursday Feb 2024

Posted by in Uncategorized

≈ 1 Comment

Tags

, , ,

WHAT IS A MOTHER?January 16, 2024.

What can I say about a mother I really didn’t know? A child who married too young and who gave birth to her own first child, me, at age sixteen? A child who had more children in such a short time afterward. A woman who in separation and divorce with my father, said she did not want to raise a disabled child and said she give me to my dad and she’d keep the house. I’m not making this up. She told me this story to my face.

What can I say about years, month after month, going on my required visits to see her? How can I express how I always felt so different, so out of place, so unable to fit in? How did it feel to walk with her and feel her shaking every time she had to guide me? How did I feel in the midst of the deepest grief over my father’s death, and when she appeared for the service, she told me that she came for one of my brothers, not for me? How am I suppose to know this person, to love this person like a mother, instead of the love I have for the woman who actually did raised me?

Then there was the mother who raised me from age six to fourteen. The one who took me to all those rheumatology appointments, told off the boys who made fun of me, was there every afternoon when I came home from school, held me when I cried, comforted me when I had nightmares, fed me chocolate pudding when I was sick, listened as I got my first crushes, as I went on and on and on about this or that boy, who wept with me when the time came that Dad decided to leave her, and I had to go away, because she wasn’t a biological parent, and in this case, a judge wouldn’t give custody to a stepparent. She is the mother of my heart. She is and always will be the one who means “mother” to me.

Yet, this once child, the biological mother I never knew had some qualities I greatly admired. She was a hell of a cook, and I wish I had her biscuits and gravy right now. she was a hard hard worker. She always won when she went to Reno to gamble. She was incredible with money, never blowing everything she had in an instant. I am a good cook too. I was a hard worker when retired. I always lose when I gamble, so I never do it. I am not amazing with money and don’t save it worth a damn.

What am I supposed to feel when I get a call saying this once child bride and mother, the biological mother,  has died? Age 82 with terrible dementia? I thought I’d feel guilty because I haven’t seen her since  Dad’s memorial service, nearly 27 years ago? But I don’t feel guilty. Aren’t I supposed to feel a loss? But I don’t feel that loss. I feel sad for the rest of her family, but I don’t have that grief that many might say I I should feel, as if it is an instinct to love a biological person, simply because they are biological? I feel nothing, one way or the other, and I’m writing about it, because it feels weird to feel nothing at all. It’s more like the sorrow I might experience hearing that anyone I hardly knew had died.

Does this say something unpleasant about me? I had intense, deep grief for many years following my dad’s death. Was I so traumatized for so many years after my dad’s death, that I trained myself to feel nothing at any future losses? Or is it just a matter of life. Life apart, life not communicating, life going along, day after day, until all that time is gone, and it’s too late to feel anything? I don’t know. But I wanted to write this to clear my head and move on. I have enough to worry about right now.

Farewell, Marsha. Be at peace now. Your work is done; your new adventure begins. We were so different, worlds apart in attitudes and dreams. Maybe, if we’d both worked at it, there might have been something for us at the end. Something besides this feeling of quiet sadness, that I can’t even find sorrow at your death. I feel sorry for those you left behind, for the husband and children that came after my little girl years. If I feel sadness, it’s for that child, the one who didn’t get to o to proms, graduate high school, spread her wings and fly to wherever those dreams she must have had would take her.

Be at peace little girl. Your labor of life is complete.

The Results

01 Thursday Feb 2024

Posted by in Uncategorized

≈ 1 Comment

Tags

, , , ,

February 1, 2024

When I last posted, I was going to my oncologist to get the word on the results of my latest CT scan. The scan showed that the nodule on the left lung, the one that had grown before had grown more, but still not enough to be able to do a biopsy. Rosie, my sister, who is my medical proxy and always with me at these appointments, and I protested. Isn’t there something, anything we can do. Dr. Z explained that they can’t do anything until the nodule is big enough to be able to do a biopsy and get the pathology on it. A PET scan would not be helpful, because they still can’t tell if the nodule is cancer, not until they can get a biopsy. so, we wait another three months and do another scan. Ugh. I see Dr. Z again on April 22. He even reminded me that JRA can form nodules in the lungs. I don’t think those nodules would grow like this one, but they have to be sure. After all, any treatment for cancer is hard on the body, so it’s not good medicine to treat before you know.

I am so frustrated with this process. Having lived with the JRA all my life, i’m used to taking action for my disease. Meds not working well anymore, let’s try something else. Joints worn out or mobility lost to the point of nearly unusable, let’s do a joint replacement. Action, not this waiting and waiting. But this is the best course for now.

I decided that i’m not going to waste the next three months. I was so devasted after October, and the huge growth of one of those nodules, that I just drifted until the next appointment. i will not do that this time. fascination, the next book in my Haven Valley series, is almost halfway done. i’m determined to finish it before seeing Dr. Z in three months. It won’t be publishable yet, but at least to have the first draft done. i’m determined to work on other aspects of my life, and spend every day being glad I’m still here and still going on, kicking and screaming some day–not really but in my mind–content on other days, but still going along. And we’ll see what we see, on April 22.

HERE WE GO AGAIN

14 Sunday Jan 2024

Posted by in Uncategorized

≈ 1 Comment

HERE WE GO AGAIN

January 14, 2024

Here we go again.

Up till October 2023, it seemed I was truly in remission. All my scans came back clean. There were some nodules in my lungs, but they stayed the same size for a year and a half, so nobody was worried. My oncologist, Dr. Zhou, said last April, that if my scan was clean in October, and again in April of 2024, he would consider me cancer free.

Well, the scan was not okay. The nodules in both lungs had grown significantly. One of them grew more than three times the size it was in April. All the others had grown as well. But even the big one wasn’t quite big enough for a biopsy. Dr. Zhou said we should wait three months this time. I have my next scan on Tuesday, and I see the doctor the week after that.

The oncologist said he has some good meds that will help if the biopsy shows it is cancer. I’m concerned though because I have an auto immune disease, so I can’t take the immunotherapy drugs. It would send my JRA in to overdrive. One guy on a kidney cancer support group I’m in said he had an arthritis type immune disease, and his doc put him on the immunotherapy drugs anyway. His arthritis got so bad he was basically bed ridden. Even the meds that target the tumors and try to shrink them have terrible side effects.

I have a lot of support. My sister, and several good friends are here, plus other friends for the moral support. I need to get a different bed in my master bedroom, because my current one is high, and I need to use a step to get into it. If I get sick or weak from side effects of meds, I don’t want to be shaky trying to get in or out of my bed. But otherwise, I think I’m as prepared as I can be. I’m planning in case it’s the worst scenario, but I’m hoping for the best.

Oh yes, in case anyone is wondering, kidney cancer can spread to the lungs, among other places. And because it is still kidney cancer, chemo and radiation don’t work well on that particular cancer.

Life sure is an interesting ride!

ALL THINGS NEW AGAIN

03 Tuesday Jan 2023

Posted by in Uncategorized

≈ 3 Comments

Tags

, ,

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.

oncology visit

27 Thursday May 2021

Posted by in Uncategorized

≈ 1 Comment

Here is the news from the oncology visit.

Here’s the scoop

My oncologist, Dr. Maymani explained some things about the pathology report. He described the cancer tendrils as creepy crawlies, which made their way into the renal vein and blood vessels, into some fatty tissue around the kidney and into the lymphatic system, though not in the lymphnodes.

Kidney cancer is a tricky thing. It doesn’t respond to chemo or radiation. It is most often treated with new clinical trial drugs, Immunotherapy. However, in my case, because of my JRA, which is an auto immune disease, I would not be accepted for any clinical trials. The drugs enhance the immune system, but mine is already defective, not to mention how it could make my arthritis even worse.

So, we are doing what he called surveillance. For the first year, I will have a CT scan and meet with him every three months. We’ll do the first one in two months, since my last scan was over six weeks ago. After the first year we’ll cut back to every six months. The thing is that there is a 50 percent chance that the cancer will come back within the next five years. And of that 50 percent, 20 percent of patients cannot be cured. Also, apparently, kidney cancer is one of a handful of cancers that can be aggravated by a defective auto immune system. The immune system is constantly working to fight off cancer, in any normal body. But for those of us with problematic immune systems, it may not be doing what it should.

The oncologist was absolutely wonderful! He spoke directly to me. He told me he’d read all about me and the process so far, but he wanted to hear about it from me. He also knew what JRA is and wanted to hear about that from me. He was straightforward, honest and explained everything beautifully and clearly. He asked me multiple times, how I felt about what we were discussing, what my thoughts were, did I have any questions. He answered all my questions. He answered things the damn urologist would never give me a straight answer about. He checked my incision, something else the urologist never did. He asked me how things are feeling since the surgery and if urinating seems to be doing okay since surgery. He also had blood drawn so he can monitor my kidney and liver function. I asked about diet and he said no special diet. People with kidney disease need to eat a low protein diet, but not people with kidney cancer. He just recommended watching my blood pressure—it was sky high today, though that is unusual for me—and watch my weight so I don’t develop diabetes. I’m not happy about this wait and see thing. I feel like I have a sword over my head and I’m just waiting for it to come down or to be pulled away. I have a 50 percent of having the cancer come back, and then only a 30 percent chance of surviving if it does. I am not usually one who expects a wait and see attitude medically. Joints damaged by JRA, let’s replace. JRA flares up, let’s try new meds. There’s always been something to do. But, I feel confident that I am in good hands and my doctor will do all he can to get me through this, however it turns out.

surgery and then

16 Sunday May 2021

Posted by in Uncategorized

≈ 1 Comment

Tags

,

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.

This time tomorrow

19 Monday Apr 2021

Posted by in Uncategorized

≈ 1 Comment

At this time tomorrow, I will still be in surgery. It starts at 11 AM. it should take three hours, depending on how it goes. How do I feel? I’m queasy and anxious today. They told me to stop taking ibuprofen as of this past Friday, so my arthritis is bad right now. tylenol does not cut it. sigh. i’m anxious, scared but also weirdly eager just to get it done!

trying again, an unwanted journey

01 Thursday Apr 2021

Posted by in Uncategorized

≈ 2 Comments

An Unwanted Journey

I am embarking on an unwanted journey. It’s not the trip to Paris of which I’ve dreamed for fifty years. It’s not a trip to the desert. It’s a journey through kidney cancer.

In February 2021, I had to have a physical to begin training with my new guide dog, Shani. I saw a physician’s assistant, Mark, who works with the internist I have as my primary care doc. I don’t like the internist. She talks down to me, knew pretty much nothing about    JRA, and spoke to my friend Joylene, instead of to me. But Mark was different. He oozes compassion. He knew about JRA, asked informed questions about my joint replacements and generally came off as respecting me. So, I felt confident to tell him about something that had been bothering me.

For a couple months, I’d been having pain when I had to pee, pain before and after. It didn’t feel like a UTI, but I thought that was probably it, or maybe a kidney infection. Mark ran a urine test and it turned out there was blood in my urine. He had me come back twice to run the test again with the same results. After the third one, he ordered a renal ultra sound and referred me to a urologist.

All my test results are online at the site for my health care facility, so I read the test results once they were submitted. It showed I had a tumor in my left kidney. The urologist ordered a CT scan of the left kidney, and the results showed there is a renal carcinoma. Yeah cancer in my left kidney. I am scheduled to have the kidney removed on April 20, 2021.

This freaks me out, honestly. The urologist says it hasn’t spread to other tissue, and that removing my left kidney will solve the problem, but I’m still scared. What if they find it has spread? My dad died of lymphoma cancer, and I have too many vivid memories of what that did to him, between the cancer and the chemo.

I don’t want this. I don’t want this. I do not want this! I know, I know, millions of people live with only one kidney. I’m trying to find reading material about living with one kidney. Are there dietary changes I’ll need to make? Will any of my meds be problematic? My JRA is the type that is systemic, so it can cause damage to the kidneys, among other internal organs. Will there be more risk to my lonely right kidney? I’m scared, okay, I’m scared.

Everyone is trying hard to be positive with me. It’s going to be okay. You’ll do great. No problem. I end up feeling like I can’t express my fear and the terrible constant buzzing in the back of my mind wondering what’s going to happen. My logic knows I’ll be just fine. But I’ve had terrible experiences with surgery, all those joint replacements. My heart, my emotions are just scared, and I want to scream it out to the world. It’s human nature to think, such and such could never happen to me. Of all the health issues in the world, I never thought it would be cancer. It’ll never happen to me. But it did. Sigh.

**

For people reading this who may not know, JRA stands for juvenile rheumatoid arthritis

An Unwanted Journey

01 Thursday Apr 2021

Posted by in Uncategorized

≈ Leave a comment

Tags

,

Hi all, I have a serious update about what’s going on in my life. I had to have a physical before training with my new guide dog, shani. I happened to mention to the doctor that I was having some pain when I go to the bathroom. He did a test and we discovered blood in my urine. After two more tests with similar results, he had me get an ultra sound and referred me to a urologist. That doctor had me also get a CT scan of my kidneys. It turns out I have a large tumor in my lfet kidney and it is cancer. On April 20, I am having surgery to have my left kidney removed. I’m pretty freaked and scared, even though my head knows that millions of people live without one kidney and don’t have negative repercussions. But my dad died of cancer, so for me and my brothers and sister, the word cancer freaks us out. They don’t think the cancer has spread outside the kidney, so removing it should mean no chemo or anything like that.