Hebbie Posted March 3, 2004 Share Posted March 3, 2004 I don't post to often about my "feelings", but here we go. For the past month and a half I have had some back pain. Some days it is mild, others it aches all day.....started out that my tailbone hurt when I sat down off and on....then I noticed that when I bent over, I felt a strain in my lower back....then my upper back started to hurt while sitting at my desk at work all day..... I had myself CONVINCED that I had mets to my back. I was afraid to mention it outloud for fear that it would come true.....after a few weeks, I met with my doctor for my post CT Scan appt. My doctor told me it was probably just muscle strain from our move to a new house in mid-January and to give it a few weeks and see if it went away, but I refused to wait it out and he scheduled a MRI of my Lumbar and Sacrem (which I believe is the tailbone?). I had the MRI of my back done this past Monday night after work. I was useless at work all day Monday, worried about the test. The MRI itself is a scary, stressful experience. I didn't like the tube, I felt claustrophobic and every muscle in my body was tensed the entire 45 minutes of the test. I tried to read the look on the tech's face after the scan to see if his dimeanor had changed. I swore he looked less upbeat at the end and was sure this meant he saw something. I barely slept Monday night and called out of work on Tuesday because trying to work would have been pointless. I sat in my pajamas all morning staring blankly at the television. They finally called me at 11:30 in the morning and my wonderful nurse simply said "It's clear" before she even said "hello". I hung up and cried for the next half hour out of sheer relief. The stress I put myself under was overwhelming. I was really convinced that this was it and the beast was back. I go through this with each round of 3-month CT Scans, however, instead of the anxiousness getting better, it seems to get worse with each passing scan. This was, by far, the worst. It's like I am waiting for the other shoe to drop. I am afraid to make long term plans.... I make bargains with God. Let it be arthritis -- I will live with the pain forever if that is all it is..... I make deals with myself. If I make it through this scan and all is well, I will treat myself to a haircut......after getting through this next scan, if it is clear, I am going to schedule a massage. I know that I can't keep doing this to myself because the stress can't be good for me, and I have thought about taking an antidepressent, but I have crazy issue with that to: I have this fear that the antidepressent will somehow alter my body chemistry and cause the cancer to return. Perhaps I am going crazy??? Quote Link to comment Share on other sites More sharing options...
Don Wood Posted March 3, 2004 Share Posted March 3, 2004 I've said here often "Don't borrow trouble. Theyre's enough real stuff to be concerned about." You are right -- the stress from the worry does not help the body to be healthy. You got excellent news! Enjoy it! Don Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted March 3, 2004 Share Posted March 3, 2004 Heather, I didn't dare plan more than a week ahead for the first year. Then it was a year, and I thought, now what? I spent the next two years waiting for the other shoe to drop... I am finally getting used to the idea that I might, just might, make it through this... I too was a IIIA. Life will never go back to what it was, as now we are aware of being cancer survivors, and I think I will always be looking at least a little over my shoulder. I can understand where you are just starting a new marriage and a new life would be uneasy about planning as any new bride otherwise would.... Hon, it's only been a year. It will get better. I too get antsy around scan time, and I am pretty well useless between the scan and the surgical appointment... I schedule them as close together as possible, and try to keep a grip on what's real and what's a "dark imagining". My surgeon told me the further out I get without recurrence the less likely I am to have one, but I keep feeling like my luck is going to run dry. Just keep in mind what is real or factual risk, and what is borrowing trouble. There is a real difference, and on thinking you will know what it is. I take pain meds for the stiffness/soreness, and I take antianxiety/antidepression medications to keep me even keeled. Heather, my prayers are with you, and my best wishes... I wish I could give you a big hug when you feel so badly. Truly. PM me if I can help. I wish you only the best , my friend. XOXOX MaryAnn Quote Link to comment Share on other sites More sharing options...
Snowflake Posted March 3, 2004 Share Posted March 3, 2004 Cheer up, Heather, you ARE crazy! Diagnosed yourself and everything! BUT... You're not. Not really. You have an altered sense of reality (don't we all, now?). Back pain? Sounds odd...see, YOUR surgery went from top to middle and your back pain is going bottom to top... MY surgery went from bottom to middle and MY back pain has gone from top to bottom! I talked to my medical "team" about the back pain...the radiation oncologist took a heavy look at my CT scan, said there was nothing there...the medical oncologist took a heavy look at my CT scan, said there was nothing there...my GP? Well, she said there was nothing there and started me on Vioxx - AND had my gall bladder tested. After the Vioxx, some of the back pain went away...after the gall bladder surgery, almost ALL of it went away (minus that spot where they "jimmied" my rib). I get stiff now, but not pain... I know you've mentioned before that you may have the "history" pointing to gall bladder...maybe you should see if your GP will schedule you for a function test (MORE pictures/dye). As for the growing anxiety...I hear ya! I think it's a combination of the relief that you're a year out (wahoo!) AND the "THEY" that say most often the cancer returns within the first two years.... In the mind, having achieved the halfway point and then some, it seems the odds are higher that "the next test" will be THE "Bad Test". Well, dear Heather, you and I are going to paddle the same canoe here and THAT just ain't gonna happen to us (now, you remind me of that on MY test days, okay?). Take care, Heather. You're not really crazy - you are NORMAL for the abnormal circumstances you are in. Really! xxoo Becky Quote Link to comment Share on other sites More sharing options...
Andrea Posted March 3, 2004 Share Posted March 3, 2004 Heather, I will throw my two cents in. If you are going crazy, then have them come with the white jackets for me! I like you would have panicked. However, logically EVERYONE has back pain, hence they even have "Relax the Back" stores and chiropractors! So if you think about it, those fighting these deamons have so much stress and tension, how can they not have back aches?????? Lately I have like every symptom in the book. I had chest pains; heart fluttering sensation; severe headaches; back pain, all at different times. I had a stress test and EKG about 6 months ago; I had a brian MRI for my headaches in Oct, yet I always think with each symptom "what if" b/c of what happened with my mom. Now you compound how you personally as the patient must feel and yeah, you are going to get stressed each time. Totally normal! Want to laugh at me? This is very embarassing. I am not even sure if it is funny or stupid, but I will share. I had my annual exam with the gyno on Monday. He could not adequately feel my ovaries, so he sent me for an ultrasound. I FREAKED out and went yest. When I got there, they said the dr orders were not adequate and it was a big fiasco. I was trying to be nice, but I said "I am getting this ultrasound, I am sorry if I sound crazy, but my mom is getting a lobectomy on Thurs and I just promised to organize a lung cancer walk and I need to know now for sure if I am ok." I WAS CONVINCED THAT B/C I WAS EXCITED ABOUT THE WALK, THEY WOULD FIND SOMETHING ON A ROUTINE ULTRASOUND that they seem to do yearly on me. Now is that crazy???? And I apparently was so upset and the woman felt so bad for me, she had the radiologist come out and tell me I am fine. So no, YOU are not crazy. I win the lunatic award! I am still nervously awaiting the pap results that they all do each year. I hate it! Now that I embarassed myself, maybe I will be saner after the surgery tomorrow. Although I doubt it Quote Link to comment Share on other sites More sharing options...
chloesmom Posted March 3, 2004 Share Posted March 3, 2004 Heather, I don't have the answer to the jitters and anxiety before tests and while waiting for results, but I sure to know how you feel. Now every little ache and pain worries me, and if I get a headache, I can really get myself worked up! But, you are doing everything you can to take care of your health--I really admire your knowledge of diet and nutrition and supplements and have learned a lot from your posts. Other than taking really good care of ourselves, it's out of our hands now. I had to start seeing a therapist over all this--just could not sort it out by myself--and she said that you can only have control over so much--God has a hand in everything and he will do the rest. I take a lot of comfort in that. You have youth on your side, a new hubbie, a cute kid, a new house and marriage--try to enjoy yourself. A wise person just a few posts above this said, "Don't buy troubles."' Good advice for us all I think. Take care, Quote Link to comment Share on other sites More sharing options...
ginnyde Posted March 4, 2004 Share Posted March 4, 2004 Heather, I am thrilled for you that the MRI was clean. You know I have no idea what you must go through waiting for the test and waiting for the results. Did you get my PM about helping or whatever with your walk? I know easier said than done, but try and relax and enjoy that wonderful new husband, your darling son and that great new house. Love, Ginny Quote Link to comment Share on other sites More sharing options...
Debi Posted March 4, 2004 Share Posted March 4, 2004 Hebbie, If you are going crazy, then perhaps we need to start a crazy club because I'm sure this board is full of potential members. In another post, Gina mentioned how she hasn't started her 401k plan back up, and neither have I. I hate my job but don't want to leave because I don't want to lose the life insurance for my children. A friend of mine just told me yesterday that I need to get my hair cut.. I realize I haven't had it cut since the surgery because I live in fear that my test will come back positive and I will lose it from chemo. I'm not sure if I want to hold on to all the hair I can or if I just don't want to waste the money. I keep telling myself after the next negative scan, I will get it cut. My class reunion is in July...I need to pay for the ticket by the end of March, I am waiting till AFTER my tests to send the money off. Every pain or ache I have, strikes a chord of fear in me. However, all that said, I am getting better...in small steps. For awhile, after surgery, I wouldn't even buy new clothes for myself...I didn't want to waste the money or maybe I was just superstitious. I now buy myself stuff and actually have fun doing it ( I am healed! ) I'm making plans to leave my job, hopefully in the fall. Our lives have been turned upside down and its going to take longer than a year to put it to rest. Just satisfy yourself with baby steps Hebbie, and look at how far you have come. The rest will fall into place for all of us one day! Or at least, that's what they tell me! Quote Link to comment Share on other sites More sharing options...
DeanCarl Posted March 4, 2004 Share Posted March 4, 2004 Heather, There's a little tool I use to control my tendancy to worry about things that are WAY in the future and that I don't have any control over anyway. It's called: ONE DAY AT A TIME! I wrote a message a while back about exactly what that means and posted it in the General forum. Take a look if you want. There's another little tool to help keep my mind focused where it needs to be rather than all over the place. It's called: THINK ABOUT A ZEBRA INSTEAD. That comes from the little thing called "How to NOT think about an elephant". As soon as someone tells you not to think about an elephant ... POOF! ... there he is. All big and gray and long nose and everything. So the way to NOT think about an elephant (i.e. the next scan, the next test, the next whatever) is to think about a zebra (what's for dinner tonight, that special passage in the book you're reading, etc.). As for being crazy ... sure you are. But what does THAT have to do with anything? (joking!) Dean Quote Link to comment Share on other sites More sharing options...
SandyS Posted March 4, 2004 Share Posted March 4, 2004 Heather - Honey, welcome to the club. I've wanted to discuss this before, but was afraid it would sound so terribly selfish to everyone here who is suffering, but "surviving" is no piece of cake either - even though obviously a better option! The mind is a powerful thing, depression, aniexty and guilt (for all our friends here who AREN'T doing as well) are all very real. I was stuck in a real funk that sounds similar to where you're at now. And not to argue with Dean - but "one day at a time" mentality is what had me stuck. Of course when you're going thru treatment and subconciously telling yourself you'll pull thru, half of that stems from fear that you WON'T. Congratulations Sweetie - you DID make it out the other side - now you have to commit to and accept that you HAVE a future. Talk to your Hubby about how you want to celebrate your 10th anniversary and set some goals for this year. For me, it was to get a dog from the shelter. I was very uneasy and worried about "what if I get sick again", who will take care of her? After having had her for just 4 months now, I can't imagine my life without her - and now consider we were each others angels - we both needed someone, and God led us to each other. And then I signed my life (yes - I have one!) away on my new motorcycle, cringing that I may not be around long enough to pay it off (3 years), but I bit the bullet (although I DID take their disability insurance that makes the payments if for some reason I can't work, which I've never taken before). Weirdly enough, I have more hope for the future now than I did before I ever got sick, don't be afraid to live your life to the fullest.... Hugs and prayers, SandyS Quote Link to comment Share on other sites More sharing options...
Angie Daughter of Bill Posted March 4, 2004 Share Posted March 4, 2004 Oh, hon, I can sympathize with the axiety. I am not the patient.....my Dad is. He lives with me now. He is doing great. He just started chemo......doing great with it. BUT, I watch and listen for everything!! If his cough sounds different than it did 10 minutes ago, I get anxious. He has been having blood pressure problems..........that is really making me anxious. Scan time is horrible. I know I am making myself crazy, but I can't help it. I think that anxiety just comes with this diease. Try to enjoy your family and live your life to the fullest...........the anxiety will probably get better with time. In the mean time, I think I'll see if Dad wants to share his new prescription of Xanax. Angie Quote Link to comment Share on other sites More sharing options...
Tami Posted March 4, 2004 Share Posted March 4, 2004 Heather - I too am scared. I was in my late 30's when diagnosed, non-smoker and I couldn't believe what they were telling me. My doctors totally screwed up my diagnosis and didn't know what to do with me but my insurance (HMO) wouldn't let me seek a second opinion. Every single test was done once, than twice and they could never figure out what was going on. Unfortunately, now I just can't seem to make myself go for any scans or tests. I'm just too afraid. I'm up all night worrying to the point where I am physically sick and then I end up just canceling the appointment or don't show up. The doctors messed things up so much that I just don't have any faith and what they tell me anymore and I know that if they tell me I have "it" again I will not be able to handle anymore of the treatments. I'm constantly scared about every ache and pain. Right now I have some pain in the left side (ribs). I've had it off and on since they did the first surgery. I had a pneumonectomy in 02 but was given massive radiation to the lung prior to that. My tumor was in one of the lymph nodes on one of the bronchial tubes that go into the left lung. Both my lungs were biopsied and nothing was found. When I was FINALLY able to get a 2nd opinion almost 1 yr after diagnosis my surgeon was able to remove the tumor but due to the radiation I received they had to also remove my lung and the paracartium (the sac that holds the heart) because the entire area was destroyed. Last year at my 1-yr pneumonectomy anniversary they did an x-ray which showed a broken rib and a broken/displaced rib. That is what they felt was causing my lingering pain in my left side. From the rib poking me. Sometimes it really bothers me... like now. When they saw the broken rib the wanted to do another bone scan just to make sure... but I refused. So they said a ct scan... i refused. Well now I'm approaching my 2nd anniversay. My chest hurts, my arm pit feels weird (which they originally told me is due to swelling as they removed a tremendous amount of lymph nodes from my left side) but I've canceled my chest x-ray twice. I'm just too afraid... I'm up all night worrying about the pain, or why the pain comes and goes, where it is... everything. BUT I just can't handle the tests and the scans. Sometimes I just think I'll go crazy from worry, other times I wish I was in a car accident or something and they would do x-rays or whatever and I wouldn't even know it. I know where your coming from and from what your saying you still manage to have the test and do what you should do. I think worry will always be a factor but you are able to overcome it. I don't think you can ask anymore of yourself. Quote Link to comment Share on other sites More sharing options...
beckyg Posted March 4, 2004 Share Posted March 4, 2004 Boy, we are a stressed out bunch. Somehow scans don't seem to worry me. Maybe that's because I know my tumor is there--scans are always about whther it is shrinking, growing, or stable rather than about whether the beast has decided to rear its ugly head again. I do freak out about stuff that never used to bother me--I get really bad headaches from time to time, and the prednisone make me see "floaters" when I get tired and I of course always start thinknig about brain mets. I really freak out whenver Katie or Curtis gets a cough--I think I always will be paranoid about thir lungs--Curtis and I have lived in the same environment for 10 years now--if it was pollution or radon that did this to me, there's a pretty good chance he was breathing the same stuff. But we're allowed to be paranoid--we just all have to figure out our own ways of not letting the paranoia run our lives. I have certain times of the day when I deal with "cancer stuff" and the rest of the day I just don't think about it. I resisted for a long time getting the handicapped parking pass, and I hate my oxygen tank even though I need it--both for the same reason. Putting that parking pass on my rearview mirror and dragging my tank around behind me both force me to think about cancer all the time, and I resent that. Hang in there, Heather. We love you! Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted March 4, 2004 Share Posted March 4, 2004 Hi Hebbie, You are young and strong and are doing a good job at beating this awful beast. Try and think of the tests as your guard dog against a sneak attack. It’s not the scans that scare me, it’s every new pain. I too have been experiencing back pain as well as tenderness in the abdomen. I had a PET scan a month ago that came back negative, but did they do it right? It was a storefront PET scan facility, run for profit in a shopping mall. If they screwed up a scan would they let on that anything was wrong? I know that small cell LC comes back for the most part fairly rapidly, but also, I have had back pains in the past. Do I want to have difficult and uncomfortable diagnostic tests for each pain? Do I dare ignore these things? Is there really much choice? The Oncologist sees a lot of people go down hill because that’s his business, working with very sick people. My GP might get excited over a potential fatal condition, but my Oncologist. is expecting it any week now. He depends on it to start his next chemotherapy sale, which is the main source of his remuneration. I fear the pain of spinal metastases. My brother died of liver failure from metastatic esophageal cancer. If this monster is going to get me, I hope it chooses my liver, which has few pain sensing nerves. It is a lot easier for me at 72 to be fatalistic, but I’m afraid of what may come. We all are, or should be. Dan Quote Link to comment Share on other sites More sharing options...
Andrea B. Posted March 5, 2004 Share Posted March 5, 2004 Dear Heather, I am so sorry for all the anxiety you are under. I know that my mom's cancer has effected my mental state terribly. I try not to let it, but sometimes it gets the best of me. If my mom coughs or sneezes or winces, I am certain it is cancer. Sometimes I feel that if I think this way that I can't be let down when I find out it is...like somehow I am preparing myself. Now it has transferred over into other areas...my husband complains about a pain and I am worried it is cancer. I have a headache and wonder if it is cancer. When all this is happening to me, I realize I am so overwhelmed by all the emotions and unknowns of cancer. I take the time to talk to my counselor, journal or do something else that helps get my mind off the anxiety. I can't know exactly how you feel, but I want you to know you aren't alone. Big hugs to you. Love, Andrea B. Quote Link to comment Share on other sites More sharing options...
Hebbie Posted March 5, 2004 Author Share Posted March 5, 2004 Thank you everyone for your kind words and support. It's nice to know that others are feeling the same exact way. If I am going crazy, at least I'm in good company! Tami -- I can sense your anxiety coming right through your words -- all I can say is that sometimes the stress of NOT KNOWING is worse than knowing. Please schedule some follow up test for your own peace of mind. Sandy -- your post really hit home with me. I too have been struggling with whether or not to get a dog, and whether or not to get a new car (which I desperately need). Will I be here long term to take on the responsibility that comes with these things? I've thought a lot about what everyone has said and I decided to LIVE MY LIFE UNDER THE ASSUMPTION THAT I AM GOING TO HAVE A LIFE!!!! On that note......I went out last night and bought myself a nice, shiny, brand new BMW. I pick it up tomorrow. Woo-hoo!!!! I think I have officially lost my mind.....but I'll have fun driving around looking for it! Heather Quote Link to comment Share on other sites More sharing options...
Elaine Posted March 5, 2004 Share Posted March 5, 2004 Heather: Glad to hear you are "driving into your future"--and sounds like you have a pretty nice ride to do it in. Enjoy!! Elaine Quote Link to comment Share on other sites More sharing options...
Allison Posted March 5, 2004 Share Posted March 5, 2004 Hebbie, That's the best thing I've seen all day! Enjoy! Allison Quote Link to comment Share on other sites More sharing options...
Don Wood Posted March 5, 2004 Share Posted March 5, 2004 Heather, so proud of you to get a car for yourself! Way to go! This gal is driven -- I mean, driving! Enjoy! Don Quote Link to comment Share on other sites More sharing options...
SandyS Posted March 6, 2004 Share Posted March 6, 2004 Heather - Congrats on your new car! Even those who don't have cancer are "dying" a little more everyday - start LIVING!!!!! Hugs and prayers, SandyS Quote Link to comment Share on other sites More sharing options...
Fay A. Posted March 6, 2004 Share Posted March 6, 2004 Heather, congrats on your new Beemer. There are very few things as life affirming as financing a new car for up to 60 months. (0% interest). Quote Link to comment Share on other sites More sharing options...
J.C. Posted March 6, 2004 Share Posted March 6, 2004 Heather, That is the way to go, in a brand new car, one way to get out of an anxiety attack is to do something that needs to be done, but that we postponed for a while because....... Now enjoy. J.C. Quote Link to comment Share on other sites More sharing options...
GayleMarie Posted March 6, 2004 Share Posted March 6, 2004 Hebbie, Everything you are feeling is very understandable. I would be the same way I know. You have had so much to deal with and so young. But I am so happy for you that the scans are clear! I just had to respond when I read your post. Go get your hair done or a massage and treat yourself. You deserve it! Gayle ______________________________ 10/03: 76 yr. Mom diagnosed squamous cell nsclc 11/04-1/04: 4 rounds of Taxol/Carbo 1/30/04: CT scan no change in growth/new spot 2/4/04: Taxotere (1 hour intrav.) 2/8/04: Bad reaction, bedridden with Thrush/Diarrhea 2/26/04: Starts 15 days of Iressa Quote Link to comment Share on other sites More sharing options...
Debaroo Posted March 6, 2004 Share Posted March 6, 2004 Heather, I'd say that you found one heck of a way to celebrate a clean scan-a new beemer is the perfect self-gift!!! Take a good deep breath and suck all that you can out of life!!!!!!!!!!!!!! ENJOY!! Take care, Deb Quote Link to comment Share on other sites More sharing options...
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