<p>LTS, how are things going this week?</p>
<p>Thinking of you, and wishing you wellâŠ</p>
<p>I really, really have to think of some way to NOT have days like this. Had MRI today, to rule out metastatic disease progression to the spine. My new oncologist picked up a line off the January PET, and thought that if true, the potential for paralysis isnât worth the risk, so ordered an MRI. </p>
<p>In the pre-screening area, not only did I experience every manner of privacy invasion as described in the âHIPPAâ thread, but, the nurse taking care of me actually said âoh, this must be terribly hard on your daughterâ. All I could think of was, you creep. You thoughtless, mean spirited fool. Of course this is terribly difficult - for BOTH of us. And every once in a while I am able to get myself into different mind space where I donât think about how hard this must be on my beloved daughter. Most of the time, though, I cannot, and, it breaks my heart anew over and over and over. </p>
<p>(We actually talked a lot about this over the weekend - we decided weâre rather like the story of the woman who cuts her hair off in order to buy her husband a chain for his watch, and he sells his watch to buy her combs for her long hair. We are in a terrible chinese box where neither of us can assist and support the other without significant self-sacrifice, and, the only way out is through.) </p>
<p>Anyway, I get through the scan, but then there was some confusion about did I need contrast or not. My doctor ordered it but the people doing the scanning said it wasnât necessary. The person taking care of me said âthat means very GOOD newsâ followed by âI donât know anything, reallyâ and then followed again by some statement about good news. </p>
<p>So I went back to my office, looked around on the internet, and it seems that contrast might have been required if there was any questionâŠso - either I have very obvious cancer mets to the spinal area and am unquestionably in danger of paralysis, or, I donât. My oncologist said that the fact that I have no symptoms, pain, etc. is not a reliable indictor. </p>
<p>I am sure tomorrow will be a better day. Truthfully, it can only go one way.</p>
<p>Hugs and care, LTS. We are holding you close. Lorelei</p>
<p>Iâm so sorry the staffers you dealt with today were so unprofessional. I hope the results are good news, and conclusive. Hang in there.</p>
<p>{{latetoschool}}âŠI am so sorry for all the stress and anxiety. I know how the mind can play. Iâve not been in your situation but I have been there in my mind wandering the âwhat if Xâ or âwhat if Yâ and my mind will think all sorts of things and stress me out. I am sure it goes with the territory of such an illness. What I hope very much is that you can get an answer to this one thing ASAP so that your mind stops playing tricks and wandering and gets to just KNOW the real facts. A lot of times our minds think worse things than they are. I hope you can hold tight until you get explanations from the doctor. The people handling the procedure truly donât know. I know I would be like you and start looking up every possibility it could be on the internet and over worrying until I heard the real deal. So, I canât blame you for letting your mind run away with what ifs. So, I hope this moment can pass and you can find something more relaxing to take your mind off today and then wait to talk to the doctor to hear information rather than speculation. I know how hard that must be to do though. I am sorry you have to endure it all. I think on the one hand that it is good to arm yourself with research but sometimes I find that there is a flip side to that when it comes to health mattersâŠand that is that you read all these things it COULD be and then think the worst. I have done that many many times. The internet can be great and sometimes this can be the negative side to it. </p>
<p>Hold tightâŠI hope you can do something with your daughter to just focus on something else and live for the moment. It must be very difficult to do. </p>
<p>Iâm thinking of you. Tomorrow will be a brighter day.</p>
<p>LateToSchool: So sorry for your day and your extremely thoughtless nurse. I know how your heart aches for your daughter and that you donât need to be reminded at all.</p>
<p>I know the OâHenry story: The Gift of the Magi. Yes, it can break your heart, but yes, the only way out is through. Iâll try to post that song by Lui Collins somehow.</p>
<p>I am thinking of you. Will pray that tomorrow will be a better day.</p>
<p>All my love.</p>
<p>Oh dear. I have raised worrying to an art form: one that is practiced in private; most who know me wouldnât have a clue. And I have never had a worry to compare to yours.</p>
<p>Here is a visualization that has served many. </p>
<p>There are shelves on the wall. On the shelves are several boxes. You may label the boxes as you see fit. However, in this exercise, one of these boxes is for concerns that cannot or need not be acted on right now. You can safely put your worry in that box, knowing that you can take it out and examine it any time you want to. It will be there later. But, right now, it is put away so you can sleep, or work, or laugh with your daughter, or whatever it is you need to do right now.</p>
<p>Forgiove me, please, if this seems inadequate to your situation.</p>
<p>In some ways, this will be one of the most meaningful times of your daughterâs life because of what sheâs sharing with you. Be sure of that.</p>
<p>
</p>
<p>LTS:</p>
<p>I donât know if an alternative interpretation of this part of your day might be at all helpful - or simply more aggravating. But in any event, for whatever it may be worth here goes.</p>
<p>With this comment, it seems to me that this nurse - far from simply being insensitive to you and your daughter - may well have been trying to express genuine compassion for you. Perhaps sheâs a mother herself. If so, perhaps she knows that if she were in your place, she would be - as you often seem to be - more deeply concerned about how this experience was affecting her child than about what it was doing to her. And in commenting about how hard this must be for your daughter, she may well have been talking not so much about your daughter as she was you - and about how hard this must be for you, as a mother, to see your child going through this.</p>
<p>Of course, all of this may be entirely off base. Perhaps she was being, as you experienced it, simply insensitive. But to me, at least based on the little you have said here, that seems unlikely. A nurse who was truly insensitive, I think, would be oblivious to her patientsâ own stories altogether - not commenting on them in this fashion.</p>
<p>Taking all of this one step further, if this nurse was trying to express compassion for you, what may have been so painful for you wasnât insensitivity on her part, but rather simply the genuine and undeniable pain that you are experiencing from having not only to go through all of this yourself, but also having to put your daughter through it. And sometimes experiencing anger at someone else, whether itâs justified or not, can be preferable to experiencing a profound pain that one may not be able to do much if anything to relieve.</p>
<p>Oh, well - if any or all of this strikes you as simply off the mark, just ignore it and get on with having a better evening, OK?</p>
<p>For what little it is worth, the nurseâs comment, as I understand it, struck me the same way, epistrophy.</p>
<p>I am very sorry that it caused you pain, LTS, but it doesnât sound âinsensitiveâ to me. Unwelcome, obviously, but possibly not insensitive. Perhaps understanding that the motivation may have been kind will help.</p>
<p>I have nothing constructive to say, but my heart aches for you.</p>
<p>It is a standard, empathetic listening technique to âreflect feelingsâ, to put into words what one senses another person is feeling. It can be most welcome and comforting to hear oneâs feelings put into concrete words, to experience that insight and empathy.</p>
<p>On the other hand, however, there is a danger in attempting to reflect feelings. The verbalization of something obvious, or felt to be obvious, does not necessarily bring comfort or convey empathy or insight. So, if an anvil has just fallen into my life, onto my head, the statement that âYour head must really be hurtingâ is unlikely to help me.</p>
<p>LTS, I hope you get the MRI results tomorrow, and that they are good. And I hope you donât have to re-do it with contrast.</p>
<p>Iâm sending good thoughts your way.</p>
<p>Thinking of you LTS, and hoping you will bear with us on the CC boards should any of us also blunder when âreflecting feelingsâ etc. Those of us brought up in the Fishbowl/Active Listening/Assertiveness training/Iâm OK Your OK generation can be as clumsy as anyone you meet! But well-intentioned.
Your readers here value your honest appraisals of your days and your reports of all your contact with medical staffers, and we want to know what is really happening. Thanks for plowing on with simply telling us.</p>
<p>What a horrible, terrible rotten no good day (from a Maurice Sendak childrenâs book). Sometimes all one can do is be thankful the earth rotates and the sun rises each day, meaning that there will another sunrise in about 7 hours. Thatâs another day, and another chance for a better display of humanity for you and your daughter to ponder at the end of it.</p>
<p>Iâm thinking there are daughters who will never know as much about their mothers as your daughter knows about you already. Tremendous depth and the intimate sharing you have with one another. </p>
<p>Not sure what your research revealed entirely, but I thought there were so many reasons to use or not use contrast for a spinal MRI that you canât draw a conclusion about it either way, what it meant if they didnât use contrast.</p>
<p>Anyways, the techs are never supposed to comment on whatâs good news or not good news. Sounds inexperienced.</p>
<p>Rest and peace for this evening, I hope. Tomorrow will certainly be better, as you said, it can only go one way and thatâs UP compared to today.</p>
<p>Hugs and thoughts.</p>
<p>Okay, on to a new day! Woke up thinking of you this morning and wishing you a MUCH MUCH better day than yesterday. Also woke up thinking how lucky you are to have that daughter.</p>
<p>hugs and prayers
4giggles</p>
<p>Good morning, LTS! Hope today is better for you! </p>
<p>(Corrrection: Judith Viorst. not Maurice Sendak, wrote âAlexander and the Terrible, Horrible, No Good, Very Bad Dayâ and Ray Cruz illustrated it.)</p>
<p>LTS, good morning and wish you a good day. I often admire many of the posters here who can put forth comforting messages so well, and I often wonder whether my own efforts are far from adequate. Perhaps the imaging room people were less articulate in their good wishes as well. While they are not suppose to render opinions on scans, they are often asked by anxious patients. The time that I had a scan done, I had the distinct feeling that they were a bunch of cave dwellers, living in a world of their own down in the basement.</p>
<p>I spent three hours accompanying someone to MSK yesterday afternoon. The oncologist walked in after we waited over two hours in the examining room. A young guy, whom I remember in a class. I am sure that he did too. Neither of us acknowledged it. The good news is that I remembered him as being quite brilliant, and he must have made some efforts to expedite a bunch of procedures to be done in the next two weeks. </p>
<p>Best wishes and my prayers.</p>
<p>Okay, the image of the scan people being cave dwellers made me laugh. I had an allergic reaction to the CT dye and when I started having trouble breathing I had the impression of rats scurrying out from cover when about seven people started hovering over me.
Their people skills leave alot to be desired.</p>