I'm one of the lucky ones (take that statement as you wish), that is fortunate enough to be in tune with my health, and has gone well out of the general powers that be, to create an unusually complex and thorough medical team of specialists, doctors, dentists and hospitals for myself. Not to push an elbow into his side or anything, but you can compare this with my husband, Matt, who hasn't even seen a regular MD or DDS for a check up or cleaning for, well, since I've known him actually. But I don't want to get started on that.
My point here is that this group of people are all interconnected by me, as their patient. They all correspond, all compare notes, and all work as a team to provide me with the utmost medical care possible, which I believe is saving my life. I'm not trying to kiss any ass here, but it's kind of a cry to people out there, whoever one day may stumble upon this maybe long lived, maybe short, blog, to take a full fledged interest in your health and go seek specialists in different fields if you have even the slightest inkling that something may be even a little bit not right. If you have found yourself a good doctor, they will want to work with your existing doctors to provide you the best care possible. Regardless if they share hospital affiliation, degrees or friends.
My doctors know me on a first name basis, as do their entire staff. Dr. Weingarten, my pain management doctor, and his associate Lou Malesardi know me by just Miranda, and could probably recite my chart verbatim if the need was there. And they see hundreds of patients. I know my specific medical biller in their office, as well as the lovely Marissa who books special procedures and god knows what else, Carolina, the most lovely office worker ever, the office manager, Robin, whom I have her private number on my speed dial, and that is just the beginning. This one office alone has done so much for me in the past, helping me to get through so much suffering that was caused by my spinal problems that I really do know that I couldn't have made it this far without them working with me. Not long ago, Dr. Lou, for the second time, got on the phone with my psychologist, Dr.DeSarbo, who was rxing me Chantix, to stop smoking, and my amazing pharmacist, Harvey Staub of Diamond Drugs, and figured out that the new medication was interacting with the opiate pain killers i was taking and metabolizing them too quickly, sending me into severe withdrawals. Dr.Lou, and Harvey didnt have to do this, it really wasnt their problem, but as always, they went out of their way to help. And that is just one example of my over ten specialists, working together to better my health and make my misery a little less.
I know there will be so many more stories of the kindness of my doctors in the near future. I know I'll here another collaboration story tomorrow when I see Dr. Cohen, my rheumatoligist, who I know was on the phone with my new oncologist yesterday for a while, who will soon be in contact with my PCP Dr Kanterman, who initially sent me to Dr. Cohen when he found the abnormal blood work, that was provoked by my gyno, Dr. Cucco, because I had lost my menses months and months ago.
It's so important to be an advocate for yourself with your healthcare, no matter how healthy you seem to be, or even feel. Again, I felt just lovely a few months ago and now my spleen is on the brink of rupture. You never know. Get started, seek out specialists, and get your doctors in touch with one another. Having doctors advocate for you is even more important than speaking up for yourself, they have some major pull, and it really is all about who you know, after all.
Tuesday, September 28, 2010
Monday, September 27, 2010
That Room
Dr. Gostonian was not at all what I had imagined she'd be like, and by that I mean barely in her thirties. She made me feel at ease, or as much as at ease as possible as one can be at their first appointment with the oncologist.
There was none of the BS "what seems to be the problem, etc." that one would expect. She had done her homework had memorized my labwork, story and even the size of my ever-enlarging liver, which "should be a maximum size of 11 cm." I am currently topping the liver charts at close to 17.
She did concur with me that what I am experiencing is asymptomatic of Still's Disease, if symptomatic symptoms can even be considered in the first place. It is a rare disease after all, there are no normal bits about it. Then again, you don't typically get debilitating joint pain with lymphoma either, but "it's not completely unheard of, though."
"We are going to move fast,and aggressively. I don't know if we will find what we expect to find, we may find a lot more, or something even different, but we will figure it out quickly and work on it." I did notice that she did casually leave out 'we may find less' but I tried to let that one slip my mind. Mom and I had the opportunity to ask questions, of which we had none, and were moved onto the next room, for blood work and an exam.
A pleasant nurse in her mid-forties came in to take my blood pressure. "Is that your natural color?" she asked a pale and red cheeked me, who was doing the best damn job of acting normal that I could.
"well, it's not abnormal." My skin was freezing to the touch and my face was doing a rendition of Santa Clause on Christmas Eve. Jolly red cheeks, sweating profusely from the brow.
"I'm going to take your blood pressure now, which I would not be surprised to find a little elevated. No one comes out of That Room, with a normal BP."
And the pleasant nurse in her mid-forties was right again. My normal BP of 110/70 had risen to the "slightly elevated" level of 140/100. I don't recall it ever being so high.
We will see just how high it can get when all is said and done.
There was none of the BS "what seems to be the problem, etc." that one would expect. She had done her homework had memorized my labwork, story and even the size of my ever-enlarging liver, which "should be a maximum size of 11 cm." I am currently topping the liver charts at close to 17.
She did concur with me that what I am experiencing is asymptomatic of Still's Disease, if symptomatic symptoms can even be considered in the first place. It is a rare disease after all, there are no normal bits about it. Then again, you don't typically get debilitating joint pain with lymphoma either, but "it's not completely unheard of, though."
"We are going to move fast,and aggressively. I don't know if we will find what we expect to find, we may find a lot more, or something even different, but we will figure it out quickly and work on it." I did notice that she did casually leave out 'we may find less' but I tried to let that one slip my mind. Mom and I had the opportunity to ask questions, of which we had none, and were moved onto the next room, for blood work and an exam.
A pleasant nurse in her mid-forties came in to take my blood pressure. "Is that your natural color?" she asked a pale and red cheeked me, who was doing the best damn job of acting normal that I could.
"well, it's not abnormal." My skin was freezing to the touch and my face was doing a rendition of Santa Clause on Christmas Eve. Jolly red cheeks, sweating profusely from the brow.
"I'm going to take your blood pressure now, which I would not be surprised to find a little elevated. No one comes out of That Room, with a normal BP."
And the pleasant nurse in her mid-forties was right again. My normal BP of 110/70 had risen to the "slightly elevated" level of 140/100. I don't recall it ever being so high.
We will see just how high it can get when all is said and done.
Sunday, September 26, 2010
Part One. Commencement of the Finale
Although I suppose that's a little morbid, but it's true. In any situation, not only the bad ones.
It's always the beginning of the end.
Today just happens to be the day in which I accept the fact that I am facing the toughest battle of my whole life. I actually took a deep breath in and allowed myself to be vulnerable.
I looked into my mother's teary eyes and said "I know what it is, and it's cancer."
"I know," she cried.
Up until about 10 days ago I was pretty convinced whatever was wrong with me was a manifestation of a juvenile disease, come alive again in my adult life. The Rheumatoligist called it AOSD, or Still's Disease, a systemic rheumatic condition that is debilitating and incurable. It can be controlled with immunosupressant drugs and whatnot, but there is no cure. It would be something that would have to be dealt with for the rest of my life. Severe joint pain, fevers, rashes, and other seemingly annoying conditions such as pericarditis and liver damage, and a lot of weight lost, which I wasn't exactly upset about. And I had it all, down to the diagnosis of pericarditis last Sunday with my trip to the ER, instead of what was supposed to be a ride home from one of my best childhood friends weddings. When I missed that wedding, one that I had been anticipating for so so long, I knew I was really sick. I had always said that "I wouldn't miss Angela's wedding if my life depended on it." Funny things happen when your life is really at stake however. Things like weddings seem to take a back seat to a pericardial sack not rupturing on the dance floor.
Last week, after complaining to the doctor about my abdomen feeling as if it's going to fall out, he laid me on the exam table and touched my spleen. "well, it's gotten larger I believe." it had showed some enlargement on my sonogram 2 weeks prior, but that was before I could even feel it, now I actually wanted to rip it out. Then he left the room to go get my new blood workup, only to reemerge a few minutes later, white faced, as if he'd just seen a ghost. "I think at this point it would be best if we send you to a oncologist, just to rule out lymphoma. It's unlikely but i'd like to get you in there sooner than later."
Fair enough. So I called the referred doctor and after reading the booking nurse my supposed diagnosis and specifically asking her to see dr.x, she said in a sweet, yet sound enough voice to tell me "well that specific doctor is booked for a little while longer than we'd like to wait to see you. How is Monday for you at 3pm with Dr.Y?"
"Monday is great, I'll see you at 3pm." It was currently noon on Friday.
Still's, from what I can gather, doesn't progress this quickly. Whatever this beast inside of me is has dove deep in me, taken hold of my guts, and as Ozzy put it "is going off the rails in a crazy train." it's the best way to describe it. Completely out of control. Two weeks ago I had joint pain, now I'm headed to the oncologist tomorrow, fearful that my spleen is about to rupture. And the weirdest part is that all of this started because of a slight increase in my CRP level in my blood work, at my checkup.
Whether it is Still's or my gut feeling is actually correct, I've got a hell of a trip in front of me. As I said to my greatest friend in the world, Rachel, the other day, "at this point it's either a very rare, painful, incurable disease that I'll have to deal with for the rest of my life, or it's just your plain old, run of the mill cancer. Either way, it's going to suck pretty badly."
I don't plan to post every day, or some days I may have so much to say that I post three times. Guess you'll just have to wait and see. I don't know where this is going, and I would very much like to keep it that way, because I don't know where life is going. But then again, does anyone really?
What I do know is that if there really some kind of point, some purpose to life, mine specifically, I'm pretty hard pressed to figure out exactly what that is in a very short amount of time. Maybe you can help a gal out?
-MS
It's always the beginning of the end.
Today just happens to be the day in which I accept the fact that I am facing the toughest battle of my whole life. I actually took a deep breath in and allowed myself to be vulnerable.
I looked into my mother's teary eyes and said "I know what it is, and it's cancer."
"I know," she cried.
Up until about 10 days ago I was pretty convinced whatever was wrong with me was a manifestation of a juvenile disease, come alive again in my adult life. The Rheumatoligist called it AOSD, or Still's Disease, a systemic rheumatic condition that is debilitating and incurable. It can be controlled with immunosupressant drugs and whatnot, but there is no cure. It would be something that would have to be dealt with for the rest of my life. Severe joint pain, fevers, rashes, and other seemingly annoying conditions such as pericarditis and liver damage, and a lot of weight lost, which I wasn't exactly upset about. And I had it all, down to the diagnosis of pericarditis last Sunday with my trip to the ER, instead of what was supposed to be a ride home from one of my best childhood friends weddings. When I missed that wedding, one that I had been anticipating for so so long, I knew I was really sick. I had always said that "I wouldn't miss Angela's wedding if my life depended on it." Funny things happen when your life is really at stake however. Things like weddings seem to take a back seat to a pericardial sack not rupturing on the dance floor.
Last week, after complaining to the doctor about my abdomen feeling as if it's going to fall out, he laid me on the exam table and touched my spleen. "well, it's gotten larger I believe." it had showed some enlargement on my sonogram 2 weeks prior, but that was before I could even feel it, now I actually wanted to rip it out. Then he left the room to go get my new blood workup, only to reemerge a few minutes later, white faced, as if he'd just seen a ghost. "I think at this point it would be best if we send you to a oncologist, just to rule out lymphoma. It's unlikely but i'd like to get you in there sooner than later."
Fair enough. So I called the referred doctor and after reading the booking nurse my supposed diagnosis and specifically asking her to see dr.x, she said in a sweet, yet sound enough voice to tell me "well that specific doctor is booked for a little while longer than we'd like to wait to see you. How is Monday for you at 3pm with Dr.Y?"
"Monday is great, I'll see you at 3pm." It was currently noon on Friday.
Still's, from what I can gather, doesn't progress this quickly. Whatever this beast inside of me is has dove deep in me, taken hold of my guts, and as Ozzy put it "is going off the rails in a crazy train." it's the best way to describe it. Completely out of control. Two weeks ago I had joint pain, now I'm headed to the oncologist tomorrow, fearful that my spleen is about to rupture. And the weirdest part is that all of this started because of a slight increase in my CRP level in my blood work, at my checkup.
Whether it is Still's or my gut feeling is actually correct, I've got a hell of a trip in front of me. As I said to my greatest friend in the world, Rachel, the other day, "at this point it's either a very rare, painful, incurable disease that I'll have to deal with for the rest of my life, or it's just your plain old, run of the mill cancer. Either way, it's going to suck pretty badly."
I don't plan to post every day, or some days I may have so much to say that I post three times. Guess you'll just have to wait and see. I don't know where this is going, and I would very much like to keep it that way, because I don't know where life is going. But then again, does anyone really?
What I do know is that if there really some kind of point, some purpose to life, mine specifically, I'm pretty hard pressed to figure out exactly what that is in a very short amount of time. Maybe you can help a gal out?
-MS
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