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Routine Dr. Visit - Then - Maybe not so much, Sigh

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Got caught again. Dang, when will I stop setting myself up for this stuff? No, really, I need an answer - WHEN? I am not panicking yet but yesterday was one of those supposedly routine visits to the Dr. and when I left it was like 'deer in headlights' for me. Now granted the Dr. seemed to be one fry short of a Happy Meal in how he dealt with patients, but even at that what he said left cause for concern, or at the very least the threat of concern. I finally got in to see the Urologist after that first time kidney stone incident a couple of months back. It had been postponed due to heart hastles I was having, the first time it was booked, so even with the flu hovering over my beaten up bod I dragged myself there. I got in pretty quickly and the Doc seemed nice enough, pulled up the CT of my visit to the emergency room the night of the attack and there it was, this dark spot near the bladder - the nasty kidney stone. He asked me if I was having any other physical hastles relating to it and when I mentioned one he had me go for an xray to compare with the ct, which I thought was weird since they are two different machines, but he just wanted a rough idea I guess. So I come back with the xray and he looks at it, with me, and the dark stone is gone from where it was in the ER but now there is a light colored new object in my bladder to which he says 'there it is, it's in the bladder now - if that IS IT'?. WHAT??????? What the yahell is it then if it isn't the stone? For the love of gawd, now what? - you start to think? Is this one of those cases where they go in to look for one thing and come up with something far ickier? NUTS. So I asked him if the reason it looks different is the density of the tissue of the bladder over where it was before (pretty smart eh? lol) and he mumbles 'uh huh' but it was an 'uh huh' like he was thinking that it was something else - you know that kind of 'uh huh'? Sigh. So I left there with an appt to come back in 2 weeks to have another xray done to compare where the little booger was then, and if it was still there they would 'blow it up'. Hmmm. Hey listen, just blow me up and get this over with, sheeesh. Apparently he was ready to do that anywho, he told me, before he saw the xray or knew of my history if it appeared to be still there at all.

I asked him if it was wise to use that technique since I had a pacemaker I didn't want to see go out of commission with the 'blowing up' and all and also I was on blood thinners to which he said 'ya that might be a problem' Sigh. So glad I, I REPEAT 'I' thought of that, sigh, sigh, sigh.

So, now here we go again 2 weeks to wait and wonder what the heck that thing is in the bladder, whats next if it is something other than a stone, yada yada? I know , I know, don't freak out - wait til I have all the info, it's probably just the stone - uh huh. Where's my lorazepam? lol. I am sooooooooo going to make a necklace out of that stone if I pass it and that is all it was. Okay that was a gross idea, scratch that. lol.

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

Blueroses. I think you would agree there is no routine doctor visit after cancer. It seems that as soon as I write cancer on the admission form and get a test done its a gaurantee they will find something. So I will tell you about my most embarrasing doctor visit. My normal visit ended when the doctor decided I needed an untrasound on my testicles to check for tumors. It seemed like the right thing to do as they had not been checked after my lymphoma. Worse was the fact that they could untrasound me in 20 minutes. Holy that really gives a guy a lot of time to prepare mentally after he has already lost most of his dignity during cancer treatments. My first fear was realized when a very pretty woman about 30 came to get me. My second fear was realized when she had a 18 year old female college student there for training. My third fear was realized when the college student was in class with one of my daughters talking about getting to check a guy's testicles. It only got worse when they thought they found 2 masses. It took a month to determine that I had nothing wrong with me. So as I thought I was once again dying, the local college girls were talking about me in class. My daughter actually thought it was quite cool to have her dad as a subject at school. I hope things turn out well for you. Slickwilly

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Sheeesh, nevermind cancer how did you ever get over all that embarassment? lol. Good grief that is one amazing story and brought a smile to my face despite the underlying trauma we both share with all the others on this site when 'they find something'. Thank God that your visit, although harrowing and indeed a scarey wait for the results, turned out to be okay and thank God for a sense of humour - for all of us. You're right, no 'routine' visits for us anymore. Thanks for bringing a smile to my face in spite of it all. The resilliance and humor in cancer survivors never ceases to amaze me. Take care Slick

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

Blueroses. I guess sometimes we have to laugh at ourselves. There are not many funny things related to cancer. As my daughter is still in college to become a nurse it has been a struggle. Imagine how I feel when she wants me to meet one of her friends. As the young woman was learning how to use the untrasound on me she said "none of the guys at college would volunteer for this". Well I can't imagine why ha ha. I will be glad when this class graduates and moves. But I do understand what your going through as I have been there three times and it took months to find out it was nothing. Each time bringing back the thoughts of treatments, debt, pain and frustration. People can say "move on". That would be easy if you didn't have someone claiming to find a mass everytime you visited a doctor. So its back to living one day at a time and trying to get the best out of life despite the doctors and tests. So today I saw my dentist and they were wondering why my old dentist didn't catch the cancer in my face before doing 4 root canals. Its just my luck I guess. Next time you get down I will throw you another slickwilly story. Holy I have a bunch of them as I was quite stupid during my cancer ha ha. Catch you later slick

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

I think that's what brings out the humour for us, it's a natural stress reliever, must be because so many of us have the ability to laugh at times through this maze of treatments and tests and emotional challenges. Yes I'm sure that this particular graduating class will best be a faint memory soon as possible, for your sake, lol. Oh I detest that 'move on' thingy. If they only knew eh? And that's the issue - they can't possibly now til, God forbid, it should happen to them. I'm going to get down again? OH NOOOOOOOO. lol. But if I do, by any chance, I will certainly turn to you. Thanks for the kind shoulder. Hugs. Blueroses.

terato's picture
terato
Posts: 384
Joined: Apr 2002

"One day you-re up, then you turn around
You find your world is tumbling down
It happened to me and it can happen to you."

http://www.youtube.com/watch?v=z1OkdDi4oXI

Even before I had cancer, I liked The Supremes song "The Happening", because these lyrics said so much about the uncertainty of life and what comes a long. About two years ago, I had a colonoscopy because I was experiencing bleeding from the part where the moon don't shine. It turned out I had diverticulosis and angio-dysplasia of the colon, which keep me uncomfortable on most days, not to mention always out of toilet paper!

Remember, bad times, like kidney stones, will soon pass!

Love and Courage!

Rick

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

It isn't passing is the problem. Oh, this too shall pass (eventually) I hope and if not they promise to make the wait worth my while by 'blowing it up' if it's still there. Now THAT is something worth waiting for. lol. The thing that really concerned me was when the doctor didn't seem to be sure that what he was seeing was the kidney stone in the bladder, just left me with that little puzzler for a couple of weeks. Sheeesh. You know how they say something and it catches you off guard so much that you don't even have the chance to say 'huh, 'splain please Ricky' (the Ricky from The Lucy Show, not you Rick, lol). Anywho I shall survive, with any luck at all. Take care.

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

Hey, Blue,
I just had my last CT results from my doc and he said everything was stable- yeah, right? Well, then I told him I was having quite a bit of pain in my right ribcage and lower spine that wasn't there before. He palpated the areas and said "Even if it's in the bones, the treatment is the same. So, he could order bone scans "and all that", but the outcome is the same. I love these guys!! Just when you think you've heard it all, they throw you a curve just to keep you guessing. I am on my 9th round of this clinical trial and only have one more before I can drop the Carboplatin, which is giving me such terrible neuropathy, so I guess I can take the good with the bad. I will just be on Taxol and Avastin after that, which if all goes well, I can hope for another year or so, now! Try and hang in there with the little surprises and know that I'm in your corner, hoping that it really will pass.
By the way, my daughter came home, and is in a much better frame of mind... I guess mom and dad aren't the worst people to live with when you have a problem. And the really interesting news is...my sister (you know, the one that treated my mom like your daughter treated you?) She is speaking to us and is very humble these days. go figure!! You're in my prayers,
Hollyberry

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Sigh Holly, know how you feel. You are going through such greater challenges than I but I had points in my recovery when they weren't sure about what was in store for me either so I think I can relate on some levels. Are they going to go ahead with your bone scans 'and all that' (such technical terms they use around us, eh? lol)? Or are you just going to leave it alone? Tough call sometimes. If the treatments are the same regardless I guess I see the point but how does he know what it is, maybe you coughed and broke a rib or something. Oh what do we know eh, we are just patients to some docs, not all but some. Don't know our own bods, they do. Before my transplant I told the docs that I had seemed to have retained alot of fluids cause I couldn't get my jeans done up after transplant, when they were moving me to another hospital. They checked my ankles only and said 'well maybe a little' then ignored it - the next day I went into congestive heart failure because of all the retained fluid. A very nervous cardiologist took one look at me and the fluid stats and yelled 'GET HER ON DIARETICS INTRAVENOUS NOWWWWWWWWWW'. Silly me, reporting on my own body before that happened. Sigh. Oh baby have I got stories I could tell you. lol. Anywho on the other end of the spectrum I have met alot of good caring brilliant nurses and docs who were instrumental in my long survivorship and for getting me through transplant. To the others a big fat RASPBERRY TO THEM. lol. Karma can be a biatch so I hear. lol.

Glad to hear your daughter has come around a bit, so happy for you. Good for your sister to have the strength to admit she was wrong at least, that will do her soul good. Too bad the heartache your Mum had to go through had to happen but I do believe that all the bad stuff that happens in everyone's life, sooner or later, only serves to help our soul reach the next level, allows us to learn what we need to this time around. That's what I think anywho. There has to be a reason for all of this. Right?

Take care Holly, thanks for the posting and validation. Hugs, Blueroses.

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

Blue,
I don't know what I'm going to do about the "optional" bone scans yet; I just can't get over how casual these docs can be sometimes. I guess even being in the field for 10 years (I was an MA), you just feel a little different about it once you're on the receiving end.As far as the treatment is concerned, they are giving me more hope than before, based on stable CT's. He said I could go on like this for a year or more; they had only given me 6 months in July. Something to be grateful for, anyway. I just thought it would be more important to know if it was in my bones, but he doesn't want to change the protocol anyway.
does this make sense to anybody? Since my labs are slipping a bit, too, maybe he just wants to wait it out and see how I do, I dunno.
As far as the family goes, there is never a dull moment!I think there may be more than one defective gene in this family-lol! I just sit back and watch sometimes; better than what's on TV, anyway. Hope you're feelin' better.
Much love,
Hol

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Guess there could be a number of reasons as to why docs sometimes appear 'casual' about our conditions. Could be that they are so lost in all the medical 'could be's' and corresponding possible treatments for each patient that they just forget there is an actual human being attached to that physical body. Guess they have to separate themselves from the person, to preserve themselves from all the patients they see on any given day but you would hope that they would still be able to walk a more empathetic line sometimes. I had a transplant surgeon who was known to be a real jerk with his patients but you couldn't find a better world class transplant surgeon and when you need one you don't much care about his personality.

What is an MA? by the way?

I can see your train of thought with wondering about it possibly being in your bones but hard to know what the doc is thinking since he has the whole scope of treatment in his head and we don't. I am big on going with one's gut and if you think it's important to know then ask him to go ahead with the scan. If you are wondering and worrying about the 'what ifs' then what the heck, get them done. I guess it depends on how much faith you have in your doc as well. I know I had some oncologists I wouldn't even think to question because they proved themselves to me and treated me as part of my health care team, then others not so much and I wondered at everything they said - doubted it and got myself in total knots. Go with what your gut is saying about doing the scans - you know your body and having questions answered is power to us. I had another doctor who actually did the diagnosis of my lymphoma who was probably one of the worst with patients. After a first appointment with him he would never have been able to pick a patient out in a lineup as he never made eye contact, actually come to think of it I don't know if he ever looked right at me until this one appt. when I got sick of it. At that appt. I asked him a question that was bothering me about the treatment to which he said, and I quote, "I don't know why YOU PEOPLE need to know all the details". I could not believe what I was hearing. I told him that well maybe it had something to do with this being out our LIVES. Sheeesh. He hated questions so the next appt I decided to do something dramatic so I took a long roll of paper, you know like from those old adding machines?, and I scribbed fake words all down about 6 feet of it and rolled it back up. When he came in for the appt I whipped the roll out and it fell down and onto the floor at which time I said 'I have a few questions', with a straight face. He looked at me, then down at the paper - following it along the floor - looked back up at me and we both broke out laughing. HE HAD A SENSE OF HUMOUR, WHO KNEW? LOL. After that he was still a jerk but there was a little better understanding between us, I think he may have gotten a bit of the point. I think. lol. Truly though, answers from our docs are power and if we don't feel listened to and our instincts squashed that can truly affect our handling of our situations and our recovery, I truly believe that. Go with your gut and if you need to know, get what you need.

I so dislike deadlines that docs give some of us sometimes. I understand the reasoning for taking care of our personal business if they feel time is short I guess but more than not I feel it takes away hope so much and that's not okay to me. It's a tough area to discuss. There are so many stories of people who were given deadlines and they left the deadline in the dust and went on and on and on to lead productive lives.

I started to feel better but not til late in the day, it's nothing new just the same old same old. Hugs, Blueroses

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

Blue,
you're right, I should talk about a scan next visit; I guess I understand that he feels it wouldn't change the plan. I just would like to know where I stand.
By the by, an MA is a medical assistant- I took the patient complaints, blood pressures, drew blood and did EKG,s- I was also as compassionate as I could be, maybe why I don't have as much patience for some of these guys as I should. I worked with an old-fashioned doc, whos' patients always came first.
I agree on the deadlines- they're getting so emotional and I can barely afford to give any strength to that , I need it all for my family! Thanks for your viewpoint, you always make me feel better!
Love,
Hol

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

On Tueday I visited my dentist for a cleaning. They were told about my Trigeminal facial nerve damage and my cancer. They used an untrasonic cleaning tool that sent my nerve over the edge. 20 minutes out of their office and I was at a pain scale 8. I have delt with pain for 8 years and have a real high tolerance. I have a bunch of pain and anti inflamatory drugs and tried my best to beat the pain back. 2 days out and I had not slept and wanted to put my fist through a wall. It was as much pain as I had at any time during my cancer. I can see why they call the Trigeminal nerve the "suicide nerve". So off the the ER I went for a steroid shot and pain killer shot in my rear end. I am now on steroids for 5 days to reduce the swelling nerve and face. Is 4:30 am and my face is still in pain. I guess I will write this off to a bad week and not allow my dentist to use his fancy tools. The bigger question now is do I want to cut the nerve at the base of my skull and hope for the best. Its a pain and temperature sensing nerve but I can't seem to get an answer on how it will feel after getting this never severed. Will my brain tell me everything in numb or will it put me into constant pain. 5 years out of cancer and I am still searching for answers. Still trying to have a good attitude about surviving. And possibly facing another operation so my life can be a bit better. It never seems to end. Slickwilly

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Oh my gawd I am so sorry to hear about your painful situation. I don't know what to tell you except that I guess we have all been there - or at least I sure have, it doesn't seem to end - that's for sure. One owie on the back of another owie, one goes just as the other one leaves or the first one never leaves and this one just piles up on top of the rest. It is all so discouraging sometimes. It's interesting you say that you have a high pain tolerance, after all you have been through, because I went the total opposite way. Instead of getting used to dealing with pain I have become hyper sensitive to it all and now I am stressed at even needles at times, warning nurses who draw blood of not to 'dig' around if they can't hit the vein's first off. My tolerance for pain is pretty much zero. Glad to know at least you went the other way so can stand more. Keep the faith kiddo, easy to say when you are in such pain I know, but we are all here for you to listen to your good and bad days - we all sooooooooooo understand and hope that will give you some relief. As for your dilemma on whether to have that surgery on that nerve or not you would think that the surgeon who would be performing such a surgery could tell you what the general population experiences after it. Have you found the surgeon that would do this type of thing? Why the heck did that dentist you have go at that area the way he did, or was there no choice? Grrrr. I really feel for you Slick, my prayers for relief for you have gone out. Wish I could take away the pain. Hugs, Blueroses.

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

The dental bill wasn't painful enough!?! I sure hope you let your dentist know what you went through with that visit; it might make a difference for some other patient with facial nerve damage down the line.
As far as the next surgery, does the surgeon know what you will likely experience? What about burning yourself if you can't feel the temperature of food or drinks? I would ask a million questions as you have been through so much already. I have decided to wait at least one week before agreeing to any treatments now because there have been times that I have agreed to procedures and really regretted it later. I sure hope you get the answers you seek.
You are in my thoughts and prayers,
Holly

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

Hollyberry and Blueroses. Thanks for the support. My cancer was traveling down the nerves in my face and along the bone. The covering over the nerves was pretty well wrecked. And I had tenticles reaching all over the place that took 3 hours to unwrap. I would only have part of the nerve to the right side of my face cut. It goes to the right side of the nose, upper lip and below the eye and is a sensory nerve. So no, I would not be able to feel heat or cold. But the reality is I can't now as it has been numb for 5 years. When I go out in the cold or my face gets jarred or vibrated I have all sorts of pain. And it is constant and can last for days. So I need to seek some better pain options or see about having it cut. I have access to great doctors at the University of Michigan so that is not a problem. I am not a person that likes taking drugs and I tend to push the limits on pain. I know I will be on drugs the rest of my life so I don't want to abuse them. And I am a bit limited with some medications as I still have a meningioma brain tumor. Holy my list goes on and on ha ha. Thanks for your prayers. Things are slowly getting better. Bless you Slickwilly

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

OMG that sounds so painful, so sorry you have to go through all of that day after day. I get a little toothache and I am a major baby but like I said my threshold for pain is now zero or less. I sure hope the docs can find something to help relieve you of some of your symptoms so you can focus on others. I say that because I am in the same boat, on and on and on with the lists of health issues. I hope you break down and accept some pain pills of some type though, you are no doubt reaching intolerance for all your health issues even if you think you have it all in check. Overwhelming feelings can build up and when we least expect it, smack us upside the head, I think we all know that all too well. Glad to hear you have faith in your docs though, that's so important. Take care, Blueroses

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

Blueroses. You might even have to laugh at this one. I had terrible pain on Saturday night. I finally got to bed at midnight as the steroids seem to be working. Sunday I got up with a brand new perspective on life. I now had the flu to go along with my face pain. I could take pain drugs and vomit them into the toilet. Now that is really throwing away money. But there is always a way to find hope when things go bad. I have been on a real good diet this week and no doubt dropped a few pounds. And I actually went 2 days without drinking a cup of coffee. And because I have the flu I will cancel this weeks dentist appointment ha ha. I just want a few days of calm in my life! On the drug issue. I will be seeing my doctor as what I have is on longer working. Pain drugs or anti inflamatories don't seem to effect my facial nerve at all. I don't like Steroids but it seems to be the only thing that works on my facial nerve damage. If I could take them as needed it would be ok with me. Well we never quit learning things. I hope you had your cup of coffee and doughnut this morning with the group. Catch you later Slickwilly

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

I'm sorry it took me a while to reply, Slick; I had my 10th round of chemo on this clinical trail and finally finished the Carboplatin ,but still have Taxol and Avstin in the line-up. I did finally get through to the doc , though. He agreed to the bone scan and reduced my Taxol, because of the terrible Neuropathy from it.
He bumped up my pain meds, too. I was thinking as I have had some decent relief from the Fentanyl patches, maybe it would be something you could ask your doc about (if you haven't already), it seems to be helping me mor than the oxycodone they have me on.
I sure hope you have gotten some relief and some peaceful nights! You are one tough guy and I don't know how you have done as well as you have with your attitude. Kudos to you, my friend!!
hugs,
Holly

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Hey Holly, I missed your posting too in my emails. I usually get prompted that there was an entry and I missed yours and Slicks, hmmm something is wrong here. Sigh. I wondered why I didn't see any from the site in my emails yesterday or today. Huh. Will have to look into that. I am seeing my family doctor next week and I am going to ask about that fentanyl patch cause I am sick of this morphine. Makes me feel so icky. Oxycodone I cant handle so they went straight to morphine. Speaking of pain, my back is bugging me so I am going to lie down. Just wanted to say I haven't ignored you or anyone, just haven't been getting the postings. I better email the site. Hope you are feeling not so bad. Hugs. Blueroses.

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Hey Slick, Man the fun never ends eh? Sheeesh. Poor Slick, I really feel for you, and the flu too - how lucky can you get. I've been there too just one thing upon another. What is so strange is that I didn't get notice of your posting or Holly's either, that's funny. I just happened to notice 2 new entries on this thread so checked it out. Must have been a glitch on the site. Actually I did have a coffee and doughnut (which I hardly ever have) this morning with the group, thanks. Well at least the steroids work so even though no one loves steroids if it helps it helps and you need some relief, that's for sure. You know I would take away the pain if I could Slick, we all would like to help each other in that way. You have my prayers though Slick, and that ain't half bad. Blessings Sir Slick. Blueroses.

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