RESTLESS

Restless. I’m so damn restless. I want the results of my biopsy, and I want them now! It is so hard to wait for information. I wonder if I always wanted to know things when I was a kid, because I know as an adult I certainly do, especially if it pertains to me. When I read books I prefer the third person omniscient point of view, meaning that I like knowing what all the characters are doing and thinking. And now, it is my body, my cancer, my body, and I want to know! I know I won’t see my doctor until June 10, but I can read the results, do research on anything I don’t know, prepare myself if it looks bad. I just want to know. So, yeah, I’m restless. And I’m anxious.

In a way, this is a weird mood for me. Meaning this restlessness makes me want to *do something, and *do something crazy, outrageous, expensive, unhealthy or weird. I want to go buy something extravagant, something I want but my commitment to living within my means might not allow. I want to go shop for pretty sandals for the summer, or for clothes I really don’t need. I want to go to the beach. I want to walk on a beach, even though walking on the beach has become difficult for me. I want to go to the Santa Cruz boardwalk, or pier 39, or Muir Woods or somewhere I don’t go anymore but used to love, a nice long walk where I don’t feel stressed out. I want to go eat out, at a Greek restaurant, a French restaurant, a burger joint, an Italian restaurant, or a place with really good steak, or just a place for decadent desserts! I want to go to a movie theater, eat buttery popcorn, and either laugh until I can hardly breathe, or cry until I’m practically ill from it, or both! Or a live theater show that will touch every part of my soul. I want to drink wine or margaritas and talk my heart out. I want to read something, just something, that occupies me so deeply, so fully, that even cancer can’t distract me from the power of the book. I want to breathe, play, and just run, run away from the fear and the waiting, and just forget myself for a while. To be not calm, to be not under control, to be a little bit wild and crazy and do it with all my might!

Yeah, I’m just restless and so very tired of it all.

Biopsy Day

May 10, 2024

I had the biopsy yesterday. What a day! So much hurry up and wait at the hospital. There was a lot of info nobody told me before the day, that might have been good to know in advance. But let’s start at the beginning.

Rosie picked me up at 6AM, and we were off. It took about 45 minutes to get there. When we arrived, we discovered that the directions on the site and given to me over the phone, were not exactly accurate. We went in the wrong door, security guard pointed us to regular radiology, who then pointed us to ADMC, Advanced diagnostic Medical Center. We ended up having made a big old loop, and back almost at the door we should have used to enter. It would be good for departing the hospital.

A man named Sergio started events with me. Not sure of his title, nurse’s assistant, nurse, don’t know. They’d told me to wear comfortable clothes, and when I arrived, Sergio told me to undress and put on the not so pretty gown waiting on the bed for me. He left us alone for that, and I got changed and scooted onto the bed. Sergio came back, took my blood pressure, checked my oxygen levels and my temperature. Then he was gone, and we didn’t see him again.

Next came a nurse, maybe maybe Seanna. She got me all wired up. She took my blood, inserted an idea, took my pressure again. She went over all my details again. One question she asked was, “if you need a blood transfusion, do you agree to us giving you blood product?” Okay, this made me want to laugh. I thought, what is blood product. Is it like cheese product? They call velveeta cheese product after all. Anyway I got a chuckle out of blood product.

At that point, it probably wasn’t even 8AM yet, and hurry up and wait time began. Soon, the radiologist who would be performing the procedure came to discuss. (why is it that they “perform” procedures instead of “do” procedures? Lol. My mind does go to crazy places sometimes. And here came the first info nobody told me before. Radiologist said that the nodule they needed to take a piece of was in the lower part of my left lung. “It might be hard to get a biopsy from it”. said he. “We might have to put it off a couple months until the thing grows a little more.” Then he told me that there was a possibility that my lung could collapse during the procedure, and that if I felt pain, I was to raise my finger and absolutely not speak. Speaking could cause me to breathe which could collapse the lung too. if my lung collapsed this would mean I would have to have a chest tube inserted to put some air in my lung to uncollapse it. After this cheerful declaration, he whizzed out, and I never, consciously at least, saw him again!

Well, I was heading in to freak out mode over all that, and Rosie was giving me encouragement, when Seanna spoke up. She squeezed my hand and reminded me that they do these biopsies all the time, and that there is rarely a problem. She did help me calm down. Thank you Nurse Seanna.

Following more hurry up and wait time, A man came in. His name was pronounced Zaya, but he told me to call him Z. He said he would be one of the nurses assisting in the procedure. His cheerful words of the day, let me know that though they would give me pain meds and numb me, I would actually be awake during the procedure. Something about not letting me sleep, because deep breathing could cause that happy lung collapse. But he was friendly and comforting, and though freak out mode appeared again after he left, I calmed down again.

A quick side bar here. The weird thing during all the freaking out modes, was that the heart monitor dined every time my heart rate wen below fifty, and even when I was anxious or scared, it would still fall below fifty. My blood pressure started out extremely high for me, but in the midst of freak out mode number one, it dropped back down to normal. Weird.

It was now twenty after eight, and we were back in hurry up and wait. But right at 9AM, Z came in with another nurse for the event, and after Rosie and I exchanged see ya laters, they wheeled me off, with all my attached equipment. The procedure was about to start!

They wheels my bed right next to the CT scan table, and they had me move as far to the left as possible and rolled me over to my stomach and on that table. They stuck a pillow under my face and told me to turn my head to the side. “I can’t turn it far,” I objected. “I don’t have much motion there because of my arthritis.” They kind of blew that off, or at least didn’t respond. I tucked the pillow down as far as I could from my nose. Z placed a oxygen thing into my nose, and I remember feeling much relieved as I felt the oxygen go in. Then z said he was going to put something in my IV, and I went away. Well, I guess I was there, but I didn’t know another thing until they were putting something on the wound and being rolled back to my original spot back on my original bed.

I asked them to call Rosie, and she was right back with me. We talked. I tried to go back to sleep, but the area was just too noisy. Every time that heartbeat went down to less than fifty, ding, ding, ding, went my monitor. There were monitors from all the curtained alcoves surrounding mine. There were phones ringing, nurses and technicians and patients talking, and loudly.

Hurry up and wait mode took two hours this time. They had to do a chest x-ray to make sure all was well with my uncollapsed lung, and they waited two hours to do this. Not explaining why it needed to wait for two hours, but I’m sure there was a reasonable reason for it. Two techs came in and they had me sit up and put a very hard x-ray film plate behind my back. Click, they took the picture, and then whisked away to develop it. Can you say hurry up and wait again?

The only way I knew the x-ray had been read by the radiologist was that we heard him say, “Gomes is good to go” and then he took off, never speaking to me at all. I had questions about the procedure. How much tissue did they get? Would I probably or possibly have pain around the area? You know, the sort of things you’d ask a doctor after they “perform” a procedure. But he didn’t bother to even say hello and goodbye. Nurse Seanna came in, read me all my instructions, had me sign things. Rosie helped me get dressed, Nurse put me in a wheel chair, and I was out of there!

When we arrived home, I went to bed almost immediately and slept four hours. Doug fed Shani for me. I got up for a couple hours and had something to drink and ate part of a bowl of yummy home made broccoli cheese soup Doug made for me. I went back to bed at around 8PM. I was feeling considerable pain by that point, but I fell asleep and didn’t really wake again until almost 6AM today.

I’m going to go lie down again for a while after posting this. I still have some pain and still feel sleepy. But it’s over, this part anyway. I don’t see the oncologist again until June 10, because he’ll be out of the office for a couple weeks. We don’t know when I’ll get the results of the biopsy. So, guess what mode I’m in now? Yeah, you got it, HURRY UP AND WAIT!!!

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.