Tag Archives: emotions about cancer

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.

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!