Well if it was not official before, is really is now. I am boring. I went to Pittsburgh for PCR and hematologist visit, labs before, in the office at 10:30. My appointment was for 11:00. Sat there until 11:35 called to the room, the usual, weight, blood pressure, pulse and then the 'news'. Doctor had left for an early lunch, so if I had any questions, he would return around 1 or so, if I were inclined to wait. hhhhmmmmmm Husband takes off work, pull boy from school, travel 2 hours one way to have my questions written down on the back of a lab sheet and talk to the nurse. I thought when my numbers were getting better in January I was boring, my first appointments when he talked transplant were over 1/2 hour. Then in January it was about 12 minutes, this time lunch was more pressing.
Funny thing about this appointment. You all told me it would come, you all told me I would get there, but I was skeptical. You were right. I didn't worry before, I wasn't even angry when I was told the professional left the building, instead mildly amused I think, about two weeks out for PCR results, and so far that isn't even a concern. I have leukemia and I cannot forget that, but it does not have to play a part in every moment of my life nor does wasting time worrying about possibilities make the results any different.
Anyway, I am so officially boring the doctor doesn't think giving me the 15 minute appointment is worth the effort. I should be angry, annoyed, upset; instead it was, and still is kind of funny.
I hope you all become very boring to your doctors as well; boring, is not always a bad thing.
guilty as charged, I fear I am my son when it comes to telling. I swear when I do something ridiculous or unintelligent I will tell no one, by the end of the day I have told anyone that wants to listen and a few who don't really care.
Drink on my friend, you might as well I can't!
Hi Pam: I lost something along the way here. Are you saying you traveled 2 hours to see a Hematologist just to get a PCR done. I see a Oncologist/Hematologist, and I do not have to go see anyone else. Did I miss a old posting of yours, but anyhow the treatment you got should not be ignored. I would make sure its known by somebody who will do something about it, and would not be going back there again. You went through a lot of trouble to make this appointment with your husband taking off from work etc. You were not treated in a professional manner by any means.
No, you didn't miss a post, it was time for the PCR test, but mine is scheduled the same day I see dr, about a two hour drive, so I get the labs done, see the dr for the 15 minutes and then they call me with results in 10 - 14 days and send hard copy to me in the mail. I am always scheduled for PCR half hour before appointment, but am usually there an hour early, if the lab is busy sometimes it cuts the time close and all doc's today have that 15 minute rule, if you are not there 15 minutes after your scheduled appointment, you have to reschedule. So I get labs, in office by 10:30 taken back to exam room around 11:30 (app was at 11) and I saw nurse. She said dr left, and had something to do and was going to grab lunch, if I had any questions I could wait around till 1. I was not waiting, I had her write down my few questions, said to call me when he decided to take time to answer (sarcasm intended). But the kicker is I had overheard the front desk person talking to another doc from transplant wing, she wanted to confer with my doc about patient. She was angry, said if he is going to leave, I wish he would tell me before he left the hospital, she wanted to talk to him and was not speaking softly when she expressed her opinion of him leaving. The front desk person said, 'he reviewed last patient's chart before lunch, there was nothing significant, so he decided to run some errands and be back after lunch'. I was last patient. Guess I am insignificant, not a bad thing to be to a transplant doctor. I have tried to become angry, I have tried to be upset, but you know what? I have the PCR done, I had some questions and I will be looking for answers, even if I have to drive them nuts, nothing serious, just little things, and I already know what I am going to do in July. I go see him July 13 (another Friday 13, this will be my 3rd one this year to see this doc) They call to verify appointment. I am going to do the same. I am going to send a letter and then call the day before, stating my husband has taken off work, my son is with me, we drive 2 hours one way to see a specialist we pay for and the co pay isn't cheap. You all want to remind me of the appointment, I am going to make sure I remind them that he is supposed to be there also. I am still kind of laughing about it, I guess the absurdness of the entire situation hits my funny bone. Only me (and maybe Billie) would go see a specialist only to be snubbed by the person because we are no longer interesting. Go figure, I would be the odd ball!
Sometimes people treat us the way we ALLOW them to treat us. If I made an appointment with a professional that I was PAYING to be my "life preserver" in my fight against cancer - and that person stood me up like that....I would drop him like a hot crack pipe. Seriously. And after dropping him I would send a letter to my insurance company - sending a certified copy to the doctor's office - advising the insurance company to make sure this clown didn't bill me for a "normal" office visit since he was not present for the visit. But that's just me...
As an aside:
Question - What do they call the person who finishes last in his/her graduating class in Medical School?
Answer - "Doctor"
Have a great weekend everyone...
Hey Judy, they come and go, just like Friday the 13th. Such is our life now.
Mike, loved your question answer segment, hehehe I have already spoken with someone about doing just what you suggested, and dropping the hot crack pipe aka doctor, my only hold out is, am established at this lab, changing starts a new baseline, I have only 3 PCR tests since last October, just starting to see where I am going to be holding. These ridiculous in hospital/office rules, I cannot see another doctor in the same hospital (at least in our area) I would have to change everything. This PCR will show where I am, first one 87% last one .004% and I will have the new results in about 14 days. I am in the International Scale, (didn't know that till I asked on Friday) so my results are pretty good. I was going to change last year when this same doctor kept pushing toward transplant, I, and everyone on this board, plus a few others I know personally in the medical field could not understand that reasoning at all. I was responding, it took a while but when I did, my numbers dropped, and dropped hard. So in January when he was still talking transplant or at least looking for donor, I thought, "I am done." But it does take a while to find donor, it does take longer to get process rolling, and if I would fail, some of these things would be in place. If I see any type of problem develop, I will be running so far and so fast away from that situation I would win a marathon. Right now I am coasting and I guess still euphoric over the idea I was not a basket case heading down to appointment, at appointment and after appointment. The results are days away and I am not driving myself and every one else nuts because I am waiting for them. Last note, I did mention or threaten insurance company contact, stating I saw a nurse not my specialist, but then again I would prob screw up the chance to use the same lab. Yeah he got one on me, but I swear I am calling them in July and asking if he is going to be available, and then when he does swagger in the office, I am going to ask him how his lunch was on my last visit, and I am glad he took the time to as least pop his head in the exam room door this time. I am pretty good with sarcasm, I bet I will be successful in getting my point across, even if he has to be reminded of the event.
The only suggestion that I would give you is to have your blood work done 2 weeks before your visit, making sure that you try to get them done early in the week, and sent to the lab of your choice, and then copies to your home lab, primary doctor, and CML specialist. This is what I do at my home clinic, and send the results to Mayo, so that my specialist has all of the information with which to make an informed recommendation at the time of my visit. It seems like a waste to go to an appointment with your specialist without all of the data in hand. This can be done using the lab of your preference, just make sure that they can insure that the data will be there for your appointment. (Even if your onc is a loser, there is probably someone on your team there that can do a fine job of interpreting your data at your meeting.) I would not drive to my specialist without the assurance that he has all of the data with which to counsel me in person. Take care, Jack
I agree with Jack, my specialist originally told me to get my blood test on the day I attended his appointment. I ignored that from the beginning and get it done a couple of weeks ahead of time, then get a copy early from my GP. That way I know exactly what we are going to talk about at my appointment.
That is a great idea, but I live about 2 hours one way for this doctor, so I would then have to travel down and back twice. We started this schedule because of the distance. I think this is why I wasn't that offended he left. There is nothing to see except the basic labs, PCR and FISH take up to 14 days before I get a call. If I run into any problems, I am going to change docs ASAP, but unless that happens I will use the doc/lab I began with so I have a good baseline for results.Since I am close to reaching PCRU, (West Penn uses the International Scale) I will ignore the brush off. I am still considering my options, I wanted to call down the day before and ask if doc was going to actually be present for this appointment, but instead I might get labs done in July, and then stop by the office to tell them I am not coming to appointment and I do not expect a bill to be generated. If he can walk out on my appointment, then I should be able to do the same.
I'd probably have the same issue if I lived in the country - the city has to have something going for it. I'm not exactly sure what I'd talk to my specialist about if we were still waiting on PCR results and to be honest I hate getting rung up at night time with the results which happened when he did a BMB.
Getting set to do a happy dance for you if you get PCRU - can feel my feet starting to tap already.
I didn't realize you had to go all that way for your bw. I can't believe there isn't a lab closer to you, what a bummer! And the hospital close to you can't do your bcr-abl test. I'll never be able to figure out all this stuff. I just learned today how to get addresses out of my address book, without having to go to the book before I send an e-mail. I have to get a video of the happy dance, so I can do it for you. I might need cpr afterwards but Annie knows how to do that.
Pammie, you are truly an inspiration to all of us, especially all our new members, It's only been six months for you and look how far you've come! Most of us at dx have uncomfortable side effects. That is to be expected.. Then some people have no side-effects. All tkis work but sometimes it takes our bodys a while to adjust to them, and you really got blasted, I must admit we were all worried about you when you grew horns.
And being bit by a deer tick didn't help. But you have guts,and you hung in there. I'm so proud of you! ( I can see you hanging your head and saying oh shucks it was nothing!) It was the biggest nothing I ever saw. Like I said it took me over 3 years to find this board and it was a freak accident at that. I think my fingers were guided here, to my new virtual family. When I was first dx if I started going through what you did, I would have just stopped my Gleevac, and let nature take it's course. It wasn't easy for me,but I hung in there and after 3 years of those gi issues(which I had some before cml) I was truly going to stop taking my G. But then I found this site,and my onc switched me to Sprycel, and I've been doing great since.
So for all of you newcomers, hang in there, and stay on your meds it does get a lot better.
Lot's of Love Billie
Awesome post Billie! You are right, even if the start is rough, I can say with a little bit of perserverence and tweaking of meds, it is possible to move forward with this damned disease. All rough starts do not always immediately end up in transplant world, everyone should know that.
I would hang my head and say 'shucks' but I think my head is already hanging, and I am pretty sure I have never said shucks, well at least not while sober. Just think one day you may read of me in the world record book, the first person to actually grow a horn, medically documented. Oh, and I swear I didn't mean to kill that deer tick, but he is the one who decided to bury his little head into my stomach, not the other way around. Not my fault he had such a grip he came off in pieces. I did give him, well his body parts, a proper burial, watched each piece swirl as they circled closer and closer to the final flush cycle.
You would not have given up, you would have pushed through just to show those meds you are the boss, kick their royal arse as you have. And I had to keep going, you have more stories to share and each one is better than the last. I am still wondering if your mailman is a happy individual. hehehe Funny, I found this site just like you did, purely by chance, and without it those months would have been horrible. lately I lurk about and see what is going on.
New people rolling in for the first time, ignore negative posts, look to those who have been here a while, and ask all your questions, there are people here who answer them with knowledge and personal experience, can't get that anywhere else, least that's my take on this site. It takes some sifting, although it may look like we are about oakley sunglasses, diets that work, morbid horror stories that could be in the tabloids, and shoes that are stylish and fit, we are really about honest to goodness real people who have real diseases, supporting each other on our journey through these horrid cancers.
I am thinking of a new route in the lets just talk section. I have been posting there lately about politics, thoughts, life in general, and I might start a thread containing photos of 'stuff'. Mine will be loaded with dogs, a fish, and perhaps if he isn't hiding a Russian Tortoise now and again. Oh, I did forget to mention the white and black rabbits who have taken up residence in our yard. I think they are the neighbors, but you know what they say........the grass is always greener. With all this serious stuff, we need to keep the fun stuff going also, sometimes when I was feeling my worst I would log in, one day I still remember, was a terrible day and what do I find?, your story about falling off your priest's boat and then wearing his sweatshirt home. Now tell me, where in the world would I have found that story, unless I am a member of this society. Leukemia sucks, but that doesn't mean I can't have fun, enjoy life, and laugh when I become boring to Mr. You need a transplant even though your sprycel is working doctor. hehe I might need transplanted, but that is just geography.
Story on Billie, can't wait for the next chapter. Oh, and get Annie refresher classes in CPR, just in case. I am coming to visit and Ron is going to want me to leave. hehe
Ron is the most easy going person you'll ever meet. He'll probably go to bed at 7:00 pm. His entire family goes to bed really early,but they all get up at 4or5 am. That's just how they were raised, he had a rough childhood, and him and his brother and 2 sisters had to work on their uncles farm before they went to school. And his mom was a cook at the rectory at their church. His uncle paid them with food. So sad. But none of them complain about it to this day.
But be wary,we might wake up to a breakfast of raw eggs,raw liver, and oatmeal with octupus eyes. He has this sardonic sense of humor, which nobody knew he had until he we started dating in 1997. He was so very quiet and shy when I met him. I had to drag everything out of him,because I knew nothing about him. After a couple years of being with me his mom used to say what did you do to my son? His brother and sisters say the same thing. He had so much personality and humor locked up inside of him, he had to let it out just to shut me up. I got all the papers put away, so you're welcome anytime. Lots o Luv Billie
But I still have to dust! I did warn him you were coming!
Hi Pam: Now after your response, and reading further down to some of your other answers I see what your doing.
When I thought there was a possibility of needinga tranplant, I traveled to a Transplant Specialist, and it was a nightmare at the way things were done. It was like an assembly line, and you were just a number. I had 4 people trying to get my vein in my arm. Now these are people who do this constantly everyday to get people ready for transplant. I kept telling them I had bad veins, and to just go into the front of my hand with a butterfly. Nobody would listen, they just kept putting band-aids all over me. Finally I said do it in my hand or else. They did it through my hand, and the blood started to flow. Sometimes the patient knows more than all these educated idiots. I still go to the lab, and get my blood drawn through my hand. I have one girl who does it all the time, and when she is off I have to convince them how I want it done.
I hope you do not need a transplant along the way, and you can just find a Oncologist locally who knows how to treat CML.
I feel that once you get to PCRU, you do not even need the doctor except to write out your script to go to the lab.
I have been doing the same routine for 9 years. I go to the lab and get the PCR test, then I get the call to tell me all is okay. Then I have to go in to see the doctor, and pay a co-pay for her to say All Is Okay, and repeat it in 6months.
You have a great attitude toward it all. Wishing you the best on your next visit.
Billie, I read that story, I am sure he enjoyed serving beverages, and almost positive he had a healthy glass poured for himself under the bar. One thing I learned before I was 21, you were permitted in the bar and no one could ever tell the difference between vodka or water sitting in a glass and coffee with Baily's Irish Cream always looked so innocent.
Make sure you get charged accordingly. I am sure the Dr's fees are higher than the PA or Onc Nurses. You shouldn't have to pay for what you didn't get. AND esp. after a 2 hour drive, etc. I would let the onc know what you went through for the appt. and how it felt like his lunch was more important than you. The onc I have now always sees me with her personal onc nurse. She even does my BMB herself! The whole CML experience is hard enough. It shouldn't be harder than needed. This kind of thing is fixable, if not by getting a new onc. I am sad to hear how his absence made you feel abandoned. In a sense, having cancer makes you an "untouchable" in society, but we are often given special treatment at the same time. Take advantage of it. Life is short. Don't we know that too well, we, of "limited life-expectancy", (but ironically, every mortal has this problem, even the healthy ones)? I try to make as much as I can in my life count, even at the onc's.
Take care. Happy to hear you are doing well!
Missed your reply, would like to blame it on the Sprycel but I have been skimming the Internet lately. Taking the young man and his friend to spring dances/track meets/band events, cleaning up a few years of branches under huge hemlock trees, and finding time to mow about 3 acres of yard (yeah I have a rider, but lots of trimming) has kept me busy. I am once again questioning why I agreed to move out of a development with a yard my son could push off in about 40 minutes to 19 acres of ground that is about 1.3 developed and from a one floor home to a monster of a house with two sets of stairs one in front and another in back. I would mention the three car garage filled with unpacked boxes, the chicken coop that needs revamped or torn down, the half finished barn, and a few other buildings but when I do it reminds me of how much work needs done this summer. hehe Crap, I did have to remind myself, didn't I?
The dogs are loving it, they go up one set and come down the other just to run the imaginary race again. Although it will be a late birthday present I am impatiently waiting for my son's present to arrive. He is getting a metal detector. I can't wait to discover the hidden treasures in the soil that has been lived on since the 1800's. Life is good for the moment, and I can't ask for more. Nice to hear from you, hope things are well in your world as well.
This is the first time I found you since you're last post. How are you feeling? What did the doctor say, we need an update from you. When one member of out virtual family,gets sick we all worry! Are you preparing yourself for kindergarten? You have to start months ahead. My children were 18 months apart so I was quite busy. Warning! you will be a taxi driver until they graduate. And keep a ledger, we encouraged our children to get involved with school and sports activities and they did, and me and my big mouth I volunteered to be a room mother, and joined the pta etc.! And if that wasn't bad enough I got conned into being a girl scout & cub scout mother. ( For future reference, the girl scouts don't deliver the cookies the mothers do.) You remind me of me when I was younger.worry,worry,worry, about our children, or bad dreams. Somehow we get through it. Then worry,worry, about how we will pay for college,so we get part time jobs while their still in school, And we're still running to all their events My husband worked for the railroad and he traveled all the time, I never knew when he was going to leave or when he was going to be home. So this was all on me. Warning! At 8:30 when you put your little angels to bed, I guarantee one of them will tell you they have to take a cake to school in the morning for a cake walk! All I could do was say what the h---, heck is a cake walk? I never baked, I made christmas cookies once a year. And I went to my Aunts house so she could show me how!
I hope your ALL better now Love Billie
I have been bothering them, looking for FISH test, it was back on the 17th last time. I hope every one of us becomes boring to our doctors. I know I should be annoyed, but for the first time I didn't have to hear about the possibility of loosing response and heading toward finding a donor is a definite possibility. Transplant doctors are just that, and this option is where they head even if someone is responding. First appointment since last October I walked out of the hospital and office with more optimism than when I walked in. Hope all is well with you!