Why Anxiety?
I have posted here before, but as I've read other postings, I feel compelled to write again. My last radiation treatment was on September 8, 2023 at Mayo in Minnesota. I was also given one low dose of chemo at the beginning of each week, as my radiation was scheduled for two weeks, 2x/day. I was diagnosed with lower right tongue cancer with a very small tumor. During the surgery (July 31) the tumor was removed along with my right toncil and 22 lymph nodes, only one of which was positive, I caught this very early.
Even thought I had a serious and unexpected illness, I was so grateful to be at Mayo and really felt deep down that I was going to get the best leading-edge care available. Got my surgery completed and at the post op, the surgeon gave me a choice. I could go home today and not have to do any further treatment, as the surgeon said that he felt very confident that he got everything and good margins. But...he said that if I wanted a bit of insurance, they were recommending 2 weeks, 2x/week low intensity radiation and one low dose of chemo each Monday to enhance the radiation. Seemed like a no-brainer to me and I agreed with that treatment. I went through the entire treatment protocol feeling just great! My spirits were high, I had a good sense of humor throughout, I was going to go through this with courage and no fear. And I did--I felt wonderful. Until the 2nd to the last day of radiation. I started to have a sore throat and was having difficulty swallowing. Well.......that was just the prelude for what was to come. I went home on September 8th with what seemed like quart of liquid Oxycontin, Fentanyl patches and lots of Lidocaine. When I saw all this, I thought that perhaps this is going to be more of a BIG Deal than I thought. Well, turns out that I was sicker than anyone could imagine and still remain alive. I could not believe a human could feel so bad. I couldn't drink anything, including water and lost over 42 pounds (I am only at 155 normal weight). I went in the hospital for 7 or 8 hydration infusions. By mid-October, I started to be albe to eat some and drink most liquids. I seemed to be progressing physically quite well and feeling a little better. Then, out of nowhere one morning in October, I woke up with the most intense anxiety and constant feelings of panic. I couldn't believe it. The anxiety, panic, and probably PTSD we full force, 24/7, no relief! I wasn't incapacitated but wasn't far from it. Every second of every day my brain was telling me that at any second now, you're going to go crazy, lose all control and be flopping around like a fish. Of course, none of that happened, but I felt that I had to counter the doom and gloom with constant self-talk like "Im going to be ok, This is just very uncomfortable." The self-talk really didn't have much impact.
I finally called Mayo and explained what I was going through with the panic, intense anxiety and possible symptoms of PTSD every day, all day. I was finally prescribed Lorazapam for the anxiety and Ambien for sleep. What A world of difference. The Lorazapam, taken as directed has allowed my anxiety to decrease pretty drastically to a very manageable level and the Ambien is allowing me to fall asleep and sleep through the night.
So, I'm not sure where I'm going from here, but I am so unbelievably grateful for the reprieve. I am going to Mayo next week to meet with Neurology. After the anxiety took hold, I noticed a shaking in my hands and fingers. It has gotten better, but still not where I like it to be. I know that the Mayo staff keeps telling me to be patient with myself and stuff like this occurs. But...DAMN is it a chore to just get through a day sometimes.
I suppose my next task will be to taper off the Xanax, which, of course, if causing more anxiety. I'll have to cross that bridge when I come to it. Today is a manageable day! Jon Z.
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I’m glad the meds ate helping bring you relief, i haven’t encountered those types of procedures before. I hope you are able to get continued care and treatment. I suffer from anxiety which was exacerbated by 2 months of dental trauma. It was emotionally exhausting and impacted me in many ways. I’m better, but still dealing with it, along with a few other issues.
Maybe those who have tapered off Xanax will chime in. Have you considered any other types of treatment for anxiety?
I am sure I will after I'm stable enough. Probably one-to-one counseling, support groups, other non-addictive meds. I'll have to see where this leads me.
@zeip8288 Thank you for bringing this up and giving such good detail about your medical history.
I’d like to share that my cancer journey has been much like yours in the emotional sense. My cancer diagnosis was different from yours as I was diagnosed with endometrial cancer in 2019 and then a recurrence in 2021. I’ve been a Mayo patient throughout all of this. From 2019 until 2021 I went to all my cancer surveillance appointments and was shocked and stunned when I got the diagnosis of the recurrence. I did experience a little worry here and there between 2019 to 2021 but I understood that what I was feeling happens a lot with cancer survivors. I had to scramble to make everything work after the recurrence diagnosis and I lived in Rochester for 6 weeks while I had radiation therapy. I felt then and have continued to feel the expert and compassionate care of Mayo staff. Once I came back home I experienced some fatigue but overall (physically) I got back into my life. Within a few months my anxiety began to increase and it’s been there off and on since I came home from the radiation therapy. I’ve had group cognitive-behavioral therapy for anxiety in cancer survivors (offered virtually by Mayo Clinic in 2021), I take antidepressant medication, and I practice the skills I’ve learned over the years. I have had panic attacks in the past and I know how scary that is.
This all leads up to my impression based on my reading and my own experience. When you are in active treatment for cancer especially with what you and I felt with our respective cancer care teams we have so much Hope based on optimism with a robust treatment plan that we feel emotionally good. Once we finish treatment and go back to our lives especially with the experiences you described when you had difficulty swallowing, eating, and losing weight I will say that no wonder you became anxious. Life has changed as you knew it. So did mine.
Jon Z., you are doing all the right things for yourself. You are addressing the anxiety and not trying to push it away. You are taking your medications as prescribed and talking about tapering off the benzodiazepines which is a good idea. Please do that under the care of your doctor. There are antidepressants that will and do work for anxiety and you might need to try one or two of them to find something that works for you. You are considering 1:1 counseling, support groups, non-addictive medications and you came to Mayo Clinic Connect for support.
When you see neurology next week please share how you are feeling emotionally. I have found the Mayo staff to be compassionate and interested in how I’m feeling and have thanked me for feeling comfortable enough to share.
What’s the date of your appointment? Do you have other appointments besides Neurology?