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Body Anxiety

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Even though I just had clean scans, ever since I saw my oncologist I've been having some of what I'd call minor body issues. For some reason, each of them sends me into a panic. I wish I didn't have that reaction, but I do. It's been a common thing with me since my initial diagnosis almost 3 years ago.

Tomorrow I take a business trip to our company headquarters in Santa Clara. The last time I was there was almost exactly 3 years ago. I was on a business trip alone and started peeing blood during the trip. So during the day, I was at work at a conference. In the evenings I was at urgent care. I was far away from friends and family and in an unknown city. The people I work with there I don't know well because we communicate almost exclusively through email and occasional phone calls or video conferences. The first day it was red urine, which was odd. In the evening I went to the Urgent Care, where the doctor quizzed me mainly on if I was sure I hadn't had sex with any strangers (like I'd forget about that...). She was having trouble explaining the red urine. I had no fever, no other symptoms. She decided it must be a UTI and prescribed me an antibiotic and sent me back to my hotel.

The next day the pain started. I was sitting in a conference with all the people from all over my company. It's the oddest thing to work for a company of thousands of people for years, and really only know about 10 of them who sit right next to you. So I was there with 2-300 other people that I didn't know when the pain started. The pain felt very familiar. It felt exactly like kidney stones I'd experienced on the same side 10 years earlier. The experience I'd had the last time made me not want to go to the ER. Because when I had my kidney stone, all they really did was put me in the hospital and do nothing but an expensive CT scan and give me various drugs which were supposed to control the pain, but didn't, but did make me very, very nauseous. So at the end, we just waited for it to pass. I considered waiting a day or two to see if the pain subsided. Then the pain got worse. A lot worse.

I wondered how dramatic I should be. An ambulance? A taxi? I knew I was hurting too much to drive. I didn't know anybody well enough to "bother" anybody. I went out to the lobby to talk to the receptionist about calling me a cab. Luckily, just at that moment a former colleague that had transferred up there happened by and stopped to say hello. I told him what was going on and he very kindly dropped everything and drove me to the ER.

In the ER, I proceeded to talk to the doc into the idea I was having a kidney stone. He was very close to agreeing with me, then as he walked out of the room, he turned and said, "You know what? Let's do that CT just in case." An hour later he comes in holding the report and looking very serious. You have what appears to be a large tumor in your kidney. He proceeds to tell me not to worry that it's very treatable by removing the kidney and he hands me literature on RCC. In the meantime, I call my uncle, a retired oncologist. His attitude really worried me. He said, that doc doesn't know what he's talking about. This is serious. Wow. To hear an oncologist tell you that this is really serious is scary. Having a relative who is an oncologist may have it's downside. At some point my uncle says "Kidney cancer is on my list of cancers I wouldn't want to get." (Keep in mind he's been retired almost 10 years, and he had had very few patients with kidney cancer, and he had referred them to other specialists, and it hadn't gone well, so I want to cut him some slack.)

Getting the news far from home, all by myself while staying in a hotel was a very traumatic event. I understand it would've been traumatic anyway, but that night going back to the hotel all by myself was quite scary. I wasn't supposed to stay at the hotel that night, so there was the bothering the administrative assistant of my boss's boss's boss to modify my hotel reservations and flight, etc. at the last second while trying to explain (and yet not really wanting to explain) what was going on with me.

So, I think going back there is a very triggering thing for me. At least I'm not staying overnight and 3 people from my team will be with me tomorrow.

I'm sure the body issues I'm having are probably minor compared to RCC. I've had a sinus infection coming and going for about 6 weeks. Nasal and sinus congestion which has been bugging me for weeks. I went on a round of antibiotics already. My primary care doc doesn't want to give me any more antibiotics. It might all be allergies (we've had terrible heat here and I'm sure the plants are happily throughing their pollen in the air). I tried to get into my ENT, but no appointments for 2 weeks. Isn't that interesting how you can't get an appointment with some specialties until well after you're likely to still be sick? My oncologist gave me a dermatology consult last week. When is the appointment? November 9th. Lol.

The thing I'm noticing is that even after 3 years, I still get anxiety if I have any odd symptoms. The weirder the symptom, the worse my anxiety. Over the weekend I noticed my upper eyelids are both very swollen. No idea why. My mind rushed to wonder why kind of tumors in the head would cause this? Then I started googling stuff (not really helpful, btw). In the end, I decided to ignore it. I can't be rushing to the ER or urgent care every time my body does something unexpected. After all, I'm 53. My body is doing more and more unexpected stuff (or maybe I'm just paying closer attention than I used to.)

I'm really grateful for this board and for you guys. I haven't found any kidney cancer support groups in my county. Face-to-face would be nice. I will go to a support group tonight in Los Angeles that meets monthly. Dr. Figlin's team arranges speakers monthly and invited survivors, patients and caregivers to come. I'm looking forward to that.

Best to you all. I wish you good health, and particularly wish us all peace of mind no matter what our health.

Todd

Allochka's picture
Allochka
Posts: 870
Joined: Nov 2014

I am hypochondriac unfortunately (not born this way, it started 4 years ago after traumatic experience). So I do know what you are talking about.  All I can say - DO NOT GOOGLE! DO NOT GOOGLE !!! DO NOT GOOGLE !!'!!!!!!!!!!!!!!

Well, being in the same place in similar circumstances can be traumatic. Can you try to make it kind of liberating instead? Like closing the loop - it all started there, so there you'll have a fresh start of worrying less, enjouying life more, feeling more confident in your body? Can you try to force this attitude in yourself? 

 

 

Dembel
Posts: 32
Joined: Jul 2015

It's not even me with RCC and I so totally understand! It's so scary the idea of having a health issue when away from home.... my partner got his RCC diagnosis in the 'best' circumstances, close to home. And still....I travel a lot for work, and when I was in Egypt in July, going from one meeting room to another in an extremely dirty environment, I just couldn't help thinking "please don't let anything happen to me here". I never had that feeling before......

THe best advice ever is what Allochka said "DONT GOOGLE' but of course, you already knew that :-) as we all do, and still......

Try to enjoy the trip, after all, it happened to you once, statistically the chance is small of something happening there again!

 

Jan4you's picture
Jan4you
Posts: 1320
Joined: Oct 2013

Oh, Todd, your experience and anxiety now touched my heart. The BEST thing you did for yourself today was share that story with us. I applaud you for "listening" and sharing.

Now this anxiety you are having sounds like you are having some PTSDish signs from that traumatic news. Your mind/body remembers. So maybe you can consider additional stress managment techniques. I use online medical forums to talk to others with such signs/symptoms, rather than get all worked up googling information that we try and make it fit OUR symptoms.

So, I ask you, Todd, what are you learning about yourself from these experiences? Yes, your body IS trying to teach you something, lessons to help you learn to conserve your energy and utilize it for the better.

Now as far as the sinus and swollen eyes, sure sounds like possibly allergies. No, I am not a doctor, but I do get a strong medical sense about things to guide me (or others) to a more expedient solution.

If it were me, I would consult alternative solutions for sinus/allergy than just Western meds. But that is me.

Remember, not all docs, esp specialists will give you a comprehensive eval. Even our primary docs are limited.some are good at referrals because they are limited in their scope.

 WE have to become strong advocates of our own bodies by getting to know our bodies. Giving out antibiotics without clear test results stating you need them concerns me. But yet, we do trust our doctors know what they are doing, right?

When you get to be MY age, most of my doctors listen or try to be polite. For decades, much of my medical problems (not RCC) was mis=diagnosed, mis-informed or mostly dismissed as "mental" stress. Well, my response would be, "Well it is (mental stress)now!"

Do you know the Serenity prayer. You don't have to be a "believer" to say it:

(God) Grant me the serenity to accept the things I cannot change, the courage to change the things I can. and the WISDOM to know the difference.

Again, I admire how you told us your background experience that now your mind/body "remembers" as you head back to that place of traumatic news.

So do reality checks, ( Today I am fine. This moment I am relaxed, things like that). Find humor to distract you (works for me), concentrate on others and remember, someone has it worse.

LIVE YOUR LIFE! Be informed, but check things out before you accept them. Learning what to pay attention to and how to "let go" is a skill.

You are a great guy, Todd! I am one who is so glad to "meet" you on this forum!

Healing hugs~!

Jan

 

 

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Appreciate the comments and feedback Jan. Yes. I do use that prayer, when I remember to!

I saw a traditional allergist for years. I took a series of allergy shots twice, and it didn't help. My allergist finally admitted that I'm probably one of those people that allergy shots won't help (or, rather, that I'd have to take them forever and not be able to go off them like others can). Looking into alternatives is a great idea.

Best wishes and hugs to you too!

Todd

Jan4you's picture
Jan4you
Posts: 1320
Joined: Oct 2013

Todd, look up providers who use NRT (Nutritional response testing) or ART  (autonomic, response testing)techniques. That would be clinics/spas type setting that offer alternative therapies. Or, I used a highly trained nutritionist. He saved my life a few years back when nothing else works. AND the supplements are WHOLE foods, ( in tablet/capsule form) so they do not interfere with RX meds.

Good luck on your return to this place!

Hope you find out what is making you so miserable.

Jan

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

I think I am one now too. I was not before at all.

It's good advice. No google. Try and let it go and relax. Enjoy life. Take a breath.

You have to laugh, actually. With these nasal/sinus issues and some slight lung issues (I was just sick from a bronchitis), I was feeling short of breath on the weekend. The thought comes "Maybe lung mets..." then I have to tell myself, "Hey! You just had a CT a week ago. They would've seen lung tumors so knock it off!"

:)

Todd

APny's picture
APny
Posts: 1948
Joined: Mar 2014

 

Yes, it’s definitely a trigger. I was thinking of PTSD too and then I saw Jan saying it. It’s so true; it is like that, anything can trigger off the anxiety and fear associated with the original episode. I really feel for you and I know myself well enough that I’d feeling exactly the same way. My peeing blood happened at the airport on our way to our Christmas vacation in Barbados. Ever since then every time I go to the airport for a flight now I have this fear of going to the bathroom and seeing a bowlful of red. Very anxiety producing having to relive the same experience. And I do the same. Google the hell out of every symptom and imagining mets everywhere. It’s easier said than done not to do that or not to let our imagination get the worst of us. Just keep telling yourself all your scans were clear. But to be anxious anticipating your trip, I totally get it. Hang in there and sending you a big hug.

 

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

I've had that too since my initial diagnosis. Every time I go on a trip (particularly alone, or going to a place where I'll be alone), it comes back.

A year after my diagnosis I was working in Italy and got sick while I was there. Sick enough I ended up in the ER. So on top of being alone, I had not being able to speak the language, not being able to talk to people on the street/in the hotel or in the drug store (all the OTC medications are completely different than what we have, which I never anticipated).

I totally get the trip anxiety associated with being very sick during a trip.

Hugs,

Todd

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

It struck me, as all the medics came round askingabout my symptoms, that Hyperchondriacs should not be allowed to get cancer. My nurses agreed, but said there was nothing they could do about it.

Dont google! Its only going to add to your worries without giving you any answers you can trust in

Skagway Jack's picture
Skagway Jack
Posts: 221
Joined: Oct 2013

Hey Todd,   i totaly get it.  I have struggled with bronchitis this last year for the first time in my 55 year life.  I worried about mets to the lungs too, but of course they were clean as a whistle.   Someone mentioned its like being a fugitive ad always worring the that the cancer will find you again.  

I do have a suggestion for traveling.  I always to try to go to a baseball game in strange cities.  Its not that I am a huge baseball fan, but I just enjoy the signts sounds and hot dogs of course.   I have a another friend who is a collector of fountain pens and when he travels he always seeks out places to indulge his hobby.  Bottom line, is find something positive to look forward to when your on the road.

Regards the swollen eyes, definiately sounds like allergies.  I agree with Jan try some non-conventional techniques.  One that helps me is to eat local raw honey.  The exposer to the pollens in this form helps build the imuune system.  Good luck and hang it there.

 

Jack

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Well Todd, it certainly is understandable that you have these feelings as you approach your trip. It was a sad story, really. But try not to worry too much. Yes our bodies are changing (and falling apart more) as we age. But you have  reason to worry - as we all do. We learned how important it is to listen to our bodies. So listen to your body....but stay away from google!! Conquer those fears and show RCC whose boss! This time, enjoy your trip and take in other lovely sights while you are there (other than the hospital! LOL)

Take care and bon voyage!

Hugs

Jojo

jason.2835
Posts: 337
Joined: Nov 2014

Todd,

Anxiety often is triggered by something that reminds one of a past traumatic event. Your original event sounded pretty damn traumatic, so it is perfectly natural that you would feel some trepidation in putting yourself in a similar situation. It's totally natural and I wish you wouldn't beat yourself up over it. For instance, my first gallbladder attack came about after I went to place called Movie Tavern to see "Guardians of the Galaxy." I totally pigged out and that sent me on the train ride to Cancerville. As such, I have avoided visiting again. They didn't do anything wrong at all; there is just a small bell that goes off whenever it is brought up. 

Ive found that focusing on our general health and diet has really helped me get over the hump. Now that I am fully recovered from the 2 surgeries, I plan to go into a very strenuous regimen of diet and exercise. You just feel better and aches and pains tend to go away when you are healthier. I'm not sure if this is something that everyone really takes into account. When you eat bad, you feel bad. Not preaching; I know everyone does the best that they can, but the body and mind walk together and taking care of one surely makes the other feel better. 

- Jay

Jan4you's picture
Jan4you
Posts: 1320
Joined: Oct 2013

Excellent post, Jay!!

We ARE what we eat!

And exercise helps with mood/anxiety/body aches!

Thanks, Jan

Denisedh's picture
Denisedh
Posts: 28
Joined: Aug 2015

 I have been very lucky through my whole experience and I strongly agree with what others have said.  certain triggers, like the hospital where i had my first scans and the shirt I wore on that day....I'm thinking of giving the shirt away.  you have gone through a traumatic experience and anxiety is normal after that.  Traveling is stressful even when it's for fun (vacation is on the stressful life event list) and you had a very stressful business trip to start this whole process.  I don't know what to say except I'd feel exactly the same in your place and others here had some great suggestions.

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

why my skin is oily. I'm a potato chip!

Lays has a new biscuits and gravy flavored potato chip. Have you tried it?

Todd

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

In England and the best flavour, a taste explosion, is Worcester Sauce.

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

I suppose we can't get them here? Sounds tasty.

Todd

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Thanks for all the terrific feedback.

Trip went fine. I had 3 colleagues from work with me, and we were so busy I didn't have really any chance to be alone or think much about my health.

The worst part of it was how tired I got. My flight was at 7am, so I had to be at the airport between 530-6. I woke up unintentionally at 4am and didn't get home that night until 10pm. I was so exhausted in the afternoon, that during the meetings I considered slipping off and finding a place to lay down and take a nap without telling anybody, of course. Wow. It took 2 days to recover.

I think the advice on diet and exercise is right on. I work so hard that often I don't eat right or find the time to exercise. I also think we need to control our stress. The way I'm wired, is I get all stressed about not being able to control my stress. Haha.

Take care,

Todd

APny's picture
APny
Posts: 1948
Joined: Mar 2014

I'm so glad it went well aside from the tiredness. And lol, you summed me up perfectly with that being stressed about not being able to control the stress comment :)

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Glad it went well for you, Todd! One more step in the right direction!

Hugs

Jojo

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