no one is more surprised than me, with the exception of my dr. We met briefly yesterday and there is not much new to say. we sort of look at each other and wait, the pause bothers him more than me, that is the training. I can sit and wait for however long it takes. one of the hardest exercises for an intern is that waiting and not filling the silence. it is a skill that was a gift long before becoming a therapist. waiting does not cause me distress, waiting in line or in traffic? no problem. this waiting is different in many ways. most importantly I am not anxious for the waiting to end. this is a comfortable silence. at times it seems daring to speak the words of the future plans, the waiting may come to an end, the alternative to planning seems giving in to hopelessness. I am many things, hopeless is not one of them. my calendar is at the ready and future lunch dates, dinner plans, birthdays to celebrate, these are already marked and waiting to burst forward at the right time.
my dr. is a kind man and he is optimistic with me. we both know we are waiting and seem content to chatter a moment, nothing new, we both breath. he is going to be around for the holidays and this is reassuring. it is comforting to know that if the silence is to be broken he will be with me. there will not be a hospital visit as that might become a pattern I do not choose to establish. the mother was diagnosed with a similar problem, it should not be so serious and yet it is. she has been in the hospital maybe 3 times now. if you go they will keep you, if you build it they will come, they think if you come they must do something. the secret is knowing there is nothing to be done and accepting it. Chris asked me what the dr. said about my low energy, I tried B-12 and just got horrible nose bleeds. there is nothing to say, it is not what he wants to hear. these are the facts ma’am, just the facts. my energy is pretty good given the situation, it is going to get worse. we are spoiled by the quiet, we are waiting for the words to start. yet we do not dare listen to them. they say it has been a long silence and soon we will have to talk. I can wait, I can wait.
monday was another dr. appt and yet another one this coming monday. as I sat listening and reading the results of my latest CT scan I couldn’t help but wonder how a patient without a medical background navigates the language of medicine. not that I am that far ahead of anyone else, but somewhere in the middle, and not sure if that hurts or helps me. the dr. was being about as vague as he could be except at the parts that were semi-good news. I think I considered them more good than he did although I believe by the end of the appt I had won him over to my side:) so the words are coming out of his mouth, gramules (particles that show disease) in the spleen but the spleen does not seem to be the origin of the disease. seem being the key word here I guess. next comes the good news that my artery going through my liver is not being blocked by the growth, which is good for me since I was not so much worried about the growth as I was having to say no to surgery. then there are the kidneys with growths that are read as false negative for renal cancer 2% of the time so does that mean there is a 98% chance it is renal cancer as previously thought? or is it the 2% false negative, I choose door number 2 as in %. the dr. made a copy of the scan on cd for me to look at, telling me how “cool” the graphics are. no this is not my regular dr., dr. s is very sensitive and I could not have a better dr. to go through this adventure with. no dr. t is the guy who hunts and walks into the room and asks loudly ” how’s the gut” he is great! he is an excellent dr. and I have a lot of respect for him. he will not be crying for me any time soon. his grandmother died last yr and I said I was sorry for his loss, he replied she was old and had lived a good life. yes for some that may sound uncaring it sounds like a good sense of reality to me.
monday will bring another dr. appt. dr. turner is concerned but this is not something he can treat. not that it matters if it can be treated. okay so I am in a strange sort of mood and some may choose to believe it is that mood that speaks now. I may agree a few days from now. I have had some time to think about this and I am ready to be done. not living but done with all the dr. appts that just take up time and money. nothing is gained by this constant monitoring of my heart, yes I have one it just doesn’t work the way we would like it to. kidney functions checked ad-nauseam and now the liver. oh and let’s not forget we are adding the spleen now. it really doesn’t matter in the end which one gets me, we all know how this one ends and I just don’t want to go anymore and don’t want to give any more blood. no more x-rays, I already glow in the dark now.
time is one of the greatest gifts we have and I don’t want to spend any more of mine in a waiting room. there was a character on Saturday Night Live, played by Gilda Radnor and she would say at the end of her piece “it’s always something” and I am beginning to feel that way and pretty sure friends and family are feeling that way.
It is the patients responsibility to make the dr. a better communicator. they will explain if you ask, there are just so few that ask. I was always surprised at how people put themselves or family members in my hands without ever asking me one question. while working in forensics I had a pt. that had been on the unit for several yrs. each time he went before the board he was asked a number of questions that evaluated his insight. one big problem was he had never asked what his diagnosis was and no one wanted to be the one to explain it to him. he had been diagnosed with a severe personality disorder and due to his violent past most did not want to risk being the one to tell him. of course he does say to me one day that he doesn’t know what …. means. I handed him the DSMIV, told him to look it up and start dealing with the reality of his situation. some did not think this was my smartest move but I have to say he showed me nothing but respect after that. I research each dr. before agreeing to see them. keep in mind that they are working for you and not the other way around.
If I were a drinking woman I would have a toast now to fewer if not 0 dr. appts. of course I have to go on monday, I feel an obligation to. hopefully my cardiology appt next month will be the last for a long time if not the last one.
11/30 just adding an update here, I did not go back to see dr. t or the cardiologist. after some thought I remembered it was my choice to wait until dr. s returned and moved in to his new practice. if you know someone with a terminal or long-term illness please support them in finding the right dr. for them. sometimes we forget that it is our right to have a dr. that respects us and fits our needs. anyone living in nw georgia that wants my dr’s info can contact me, he is the best!
that is one of the best and most insightful quotes I have read and attributed to Freud. as individuals we give connotations and power to information. when is information just that? not good, not bad, just information? I think we decide for ourselves. it is easy to mistake what someones intent is when we are reading an email or text. not so easy, but done, when we hear the persons voice. we hear the tone, the context in which the comment is made and we can still get it wrong. so it is with information. when I was teaching I would tell students that information was power. now when I hear or say that I am having more tests done by the drs. friends and family automatically think this is a bad thing. one person did make the comment her impression was it was good, as hope is still alive. I want to thank her, it made me realize how easy it is to assume the worst. I had jokingly said on my fb page that I should be able to pass one of these tests by now or quit having them. although I dread hearing that I need to return next week and yes it is for yet another test, I also feel hopeful. the heart failure is a given and not going to go away or get better. however, I was tested for kidney failure and the test showed some issues to be concerned with but not kidney failure which is a good thing. though I thought my scan was good news, no liver cancer, I am now informed that it has not been completely ruled out. well by the dr. anyway, as far as I am concerned I don’t believe that is a concern for me now. no it is not denial, it is information, and belief.
we can take information and make of it what we will. some things are what they are, yes I get that. my heart is going to quit working, information, my kidneys are questionable, more information, my liver is not ”normal” so okay that is more information. I am alive now, my kidneys work right now and my liver well “not normal” is my whole life:) this information does not define me, I define it. I decide what is a cigar. to let myself become angry or to give in to self-pity would give all this information a power I will not give it. the only time I give much thought to any of this information is when I am in the drs. office deciding what this new information means to me. I care little for what a test tells me. I used to tell my students that a test only shows that you test well or not. the test of my life is living every day. I use this information to make a better life for myself and those I love. with this information I can decide if a trip is a good idea, or should I stay home and encourage my husband to go on his own. if I know that I am going to be a distraction to him and that he won’t enjoy himself because he is held back by me, then I am not going and will do whatever I can to support him going. when we had family visiting and I was quite ill I chose to not go to the ER. some people would not agree or understand that and I respect them and their opinion. I knew if I went I would be hospitalized and the whole visit would have been ruined. using that information, that power, gave me choices. so bottom line these tests give me information which gives me the power to make the best choices for myself and hopefully my loved ones.
so bring on the tests, I am ready and willing to use whatever information comes my way to the best of my ability. it is up to me not to put a negative context on what is truly neutral, sometimes I need help remembering that too. I am doing my best though to pass this next test whatever it is.
at times I have wondered if I was being a bit too optimistic and not realistic enough. today I am here to say I have no doubt being optimistic pays off in ways we can not begin to understand.
in november of 2010 my cardiologist told me not to leave town. it is my favorite time of year and we always go to Charleston to see our family and heather comes over too so we get the whole gang. there was no way I was going to miss seeing them and so we went. Chris and I knew the chance we were taking but decided to take that chance. he was willing to not go if I didn’t think we should but he knows me well enough to be packing. obviously I made it without being hospitalized and saw the cardiologist afterward and he was surprised I had not become worse.
today I went to see my primary care dr. he is just one of the good ones. as a man and a physician he is making a difference in lives. so today I say to him I want to go off a medication that has side effects that mimic those of the heart failure. in november my cardiologist said it was too risky. dr. s agreed with me that it was the only way to know for sure and we can increase other meds to cover for this one drug. the drug is one of choice for my condition so I understand any reluctance to tamper with it. however, I am thinking I don’t know if I am worse because of this drug so it makes sense to go off and see.
I am so sure this is going to be the case here that I immediately called Kristen and Heather to tell them the news. they think a lot like me and were so happy for me. if this works, and I believe it will, then I may have up to 2 more yrs to live! so for some of you that doesn’t sound like good news but if you thought the worst was coming any day now, 2 yrs would look very good to you. and who knows what will happen in those 2 yrs. Chris and I were talking about this, we have been told many times over the past 2 yrs that time was running out and if we had believed that each time? we have chosen to believe things will be okay whatever happens and when.
I was able to see the note the cardiologist wrote in december after I came back from Charleston. it said there was no medical explanation for my condition stabilizing. my primary care dr. disagreed. he said to me he believed it was my attitude that kept me going when others have not. I believe the love I have in my life and for my life has been a major factor. so I have a couple more calls to make to loved ones who believe in the power of love and positive thinking.
on average I give little thought to upcoming appts and what the drs. will say. this week I see my primary care dr. and next week my cardiologist. as I head in to these appts I do have some things on my mind. I have some decisions to make and want to make sure I ask all the right questions. being an informed patient is so important. it always surprises me how many people go to the dr. and come out not knowing any more than when they went in. admittedly some drs. do not encourage questions, they like to just give out what information they want to give and move on to the next patient. the facts for them are they have 15 minutes scheduled per patient and any more than that means they are working late, and the next patient is either waiting or someone’s time is being cut to make up for the overage. as someone who had 50 minute sessions I learned early on the chances of ending exactly on time were slim to non unless we were ending our sessions completely. under those circumstances people often did not show or just came in to say goodbye. for a short time someone else was helping me by making my appts and she booked me every hour on the hour! I was in the habit of giving myself at least a 1/2 hour in between and often just visited other staff to decompress. my california friend T was in an office close to mine and I could always count on her or her partner in crime DD for a laugh.
back to the appts at hand. for today I am not going to get into what I need to decide as I have not discussed it with my family and respect them too much to have them read about it here. this decision has been hanging over my head so to say for several months and I keep thinking I can’t do this now because of the holidays or birthdays or some other event. the truth is there will not be a good time to talk about this. however, I am trying to break it down into manageable pieces. first get as much information from the drs. find out what they are thinking and why. then I will decide when to sit down with my husband and we will decide about the rest of the family. at times we have not agreed on telling them news. I tend to be no news is not bad news and he wants to tell whatever is currently happening. my thoughts are this could be a long process (wishful thinking?) and I don’t like to put them through the little ups and downs which is just unnecessary stress. frankly I am still having problems with the whole “how are you today” question. most of the time it is followed by the ” you look good” comment. sometimes I think really? I look good? okay well I am having the worst day ever or have 0 energy but if you say I look good then…. but what are people going to say? wow you look good for someone with a heart that could stop any minute. that would be funny, I would like that actually:)
the great thing is I am going into this period with so much built up joy and love that I know, no matter what happens at this point, I have had such a good time I can’t complain! early on I said I would talk about my life, the early years, as I went on through this process. what I have discovered is it is all blah blah blah. let’s just say if you think of every horrible thing that could happen to a child, a young woman, a soldier, the wife of an alcoholic/drug addict, the daughter of an abusive mother you will know about half of what I went through in my pre-life. now I am married to a kind wonderful man who thinks I am his hero, I have a sister who I love and she loves me the way sister’s should, I have 2 step-daughters that are so much more, they are my friends as well. Grandchildren who love me and whom I adore, friends that feel like real friends and so much more. look around you, do you see how much you have or don’t have? I choose to see what I have and anything I don’t have is really of no consequence to me. My husband’s first wife Susanne sent me a birthday card, that my friends says so much.
if you live in america you are blessed by birth in a free nation, if you woke up this morning you have life, opened your eyes? put your feet on the floor? spoke? used indoor plumbing? ate what you wanted? made contact with another warm body? the list goes on and on. tonight and tomorrow as a start, think about each thing you do and imagine your life in another place or time without those blessings. choose to be grateful. I know there are days we want to say this sucks, and yes there are days it is a bit harder to find what you are grateful for but those are the days you need to be even more aware of each small blessing given to you. even the tears we shed are a gift, they are confirmation of our humanity, of loss which means we had or joy which means we have. I have a good life and someday people will say she “had” a good life.
friday I went to the dr. for my regular check-in and as I am ready to leave the dr. says “let’s see you back in about 4 weeks” okay? somehow I feel like I have failed some pop quiz and am disappointed to be back to 4 weeks instead of 6. although a few months ago it was down to every 2 weeks, when I got back to the 6 weeks it felt like a victory. part of me wanted to say no it is not okay for me to go backward or if I had known there was going to be a quiz I could have done better. that would not be the truth though. this is progress, as it is supposed to be.
luckily my dr. is a great guy and we have some very interesting conversations. we both know he is scheduled for 15 minute intervals so once we get through the nothing is better stage we move on to medical and/or ethical hot topics. he has respect for my medical background and treats me as a professional who just happens to be his patient. he went to seminary school and sometimes struggles with conflicting issues. he is kind and considerate and I am lucky that he is my last dr. they have not all been so great over the years and I have not always allowed myself to expect better. at this age and stage if I am not happy with my treatment or my husbands I am vocal about it. we are consumers and they are dependent on us for their success. over the years though I have participated in the ideal that “they” have the right to treat their pts. however and we are lucky to be in their presence.
I have had 3 cardiologists and the one I use now is the best choice for me. when he came in the room, all 6’9″ of him, he could have been a bit intimidating but he was kind and warm. he sat on a stool talking to me, when we were done he apologized for taking so much of my time and said know that he knew me it would be easier. I just felt like I could take a breath and trust him.
I was so angry when my husband’s cardiologist did not insist he go in the hospital at their last appt. (Chris was in a-fib) that I had to make Chris understand what the dr. had failed to, or had not even tried to. I am so proud to say that when Chris went in for his appt. (after an overnight in the hosp) he was very direct with the dr. and told him that next time he would expect the dr. to be very clear about what he needed to do.
so the good news is I will have a great conversation with a dr I respect and know he cares about me as a human being, so I guess there is no bad news:) well that is always good to hear!