I though that it was bad enough that the bad oncologist didn't call me with the results of my tests, but this morning he had the scheduling department deliver the bad news to me! Isn't that a helluva thing to do?
Seriously, I got a call this morning from the hospital scheduling department and the nice lady said that Dr F had ordered a "bone survey" study for me. I asked her what that is and she said it's a test they run on cancer patients that scans the entire skeletal system so see if there are any abnormalities---to put it bluntly, it checks to see if the cancer has metastasized.
Except I didn't know that I was a cancer patient. I'm still not sure but it's obvious that whatever the oncologist is testing me for isn't a good thing. He had told me in the office that if the test results were bad the next step would be this bone survey test so it appears his way of informing patients that their test results are bad is to have the scheduling department tell them they need to have something else done. Or maybe he just doesn't care at all and expects his patients to be oblivious to what's happening to them and blindly follow everything he says with no explanation as to why.
Anyway, I told the scheduler that I fired Dr F and have a new oncologist in a different practice that is still in the hospital network. She said that it would be best to wait and let the new doctor order the bone survey to make sure the results go to the right doctor and take Dr F out of the loop.
It's amazing. So far the doctor, two different people in the scheduling department, and at least a couple people at the insurance company know the results of my tests but I don't. Plans are being made for my future without my knowledge. I'm telling you, if I felt halfway like myself someone would be getting bitch slapped into next week for this shit. It's absolutely, positively NOT going to happen this way. It's still my life and *I* make the decisions for myself just like I have since I started walking and talking.
So the bone survey is on hold until I talk to the new oncologist next Friday. From what I've heard about her, she believes in strong communication with her patients. That's good because it means that she and I can work as a team.
|As for the asshole oncologist, his name is David Faragher. If I ever see him again I'm going to kick him in the balls and then refuse to tell him why.
Friday, October 7, 2011
Wednesday, October 5, 2011
Finding My Way Back
I can't believe it's been a year since I posted anything here. The last post was about my surgery and lest anyone think I had complications from that, it all worked out okay. In fact, my throat has never been better. It's the rest of my body that went to hell in a handbasket. To make a long story short it's just easier to give you a list of all the things I'm currently been diagnosed with and/or being treated for. If you follow my blog, hypoxemia is where we left off when last we talked. But here's the whole list:
Arthritis
Degenerative Disc Disease
Carpal Tunnel (both hands)
Reynaud’s Syndrome
Fibromyalgia
Chronic Myofascia Pain Syndrome
Hyperthyroidism following thyroidectomy (still working on getting the meds right)
High Blood Pressure
Hypoxemia (low oxygen saturation and they still don't know why)
Pulmonary hypertension
Mild emphysema
Hardening of the coronary arteries
Central Apnea (both sleeping and awake which means that my brain forgets to tell my lungs to breathe)
Recurring Vitamin D deficiency
Xanthomas
Hearing loss due to nerve damage, both ears. (In addition to not hearing, I can't feel the sides of my face).
Type 2 Diabetes
Hyperviscosity (my blood has the consistency of honey)
Peripheral Neuropathy
Silent strokes (total of 95)
All that sort of explains why I haven't been around for awhile. The biggest concern has become the blood problem which obviously could be responsible for a lot of the other issues. It's so bad that when they do blood tests, they have to repeat about half of them because my blood is too thick for them to run their tests on it.
I have a good neurologist who figured out that doing an MRI on my brain would be helpful. When he showed me the films afterwards, there were all these white spots in my brain. Some of them were pinpoint in size, some where as big as my fingertip. He explained that these are silent strokes (strokes that don't cause a visible, physical effect like being paralized) and they're primarily centered in the parts of my brain that control my memory, language skills, math skills, and emotional control. He started counting them so we'd know how many there were to compare it to another MRI in six months and when he got done, the total was 95.
95.
I've never fainted from bad news but I think I came close to it then. I remember babbling some silly shit about "five more and I'd have a perfect score" which was just my tongue killing time while my brain tried to assimilate what he just said.
It was a shock and still is. They don't know why I'm having strokes yet..........the neurologist said it's not his field and sent me off to an oncologist after he found a weird antibody in one of my blood tests trying to figure out what's causing all the numbness/lack of nerve response in my hands, arms, legs, feet, and face.
Now if finding out that you've had 95 strokes and seeing your brain looking like swiss cheese isn't enough to screw up your day, being told you need to see an oncologist for it takes you to a whole new level, especially when they don't tell you WHY.
Why is such a small word but it is has such an important role in life. If we don't ask why, we're doomed to oblivion and the only thing worse than oblivion is ignorance. I refuse to live in ignorance, therefore I ask "why" if I don't know the answer to something, especially if that question is "why do I have to see a cancer doctor?". The neuro said that he'd found an abnormal antibody spike in one of my blood tests but I'd need to ask the oncologist what it meant so after spending two weeks waiting to get in to see him and worrying about all the possibilities, I asked the oncologist "Why?"
He told me that it was a really long list and too much to go into. I asked him what he was testing me for and he refused to answer that either. And since he's a hematologist (blood specialist), I tried to talk to him about my little problem with the syrup running thru my veins; the strokes; the way my blood won't carry oxygen---all things that fall under the heading of "blood doctor". He told me that he didn't care about any of those things and refused to discuss them with me. He said that all he was going to do was run the same test my neuro ran to see if it was a fluke or not. He suggested that I talk to my GP about these other issues, told me to make a follow up appointment in 30 days to get the results and then he walked out of the room.
OMFG. I've never come so close to hitting another human being in all my life. I've had two pulmonologists and one of the nation's highest ranked cardiologists run thousands of dollars of tests to try and figure out these problems and he's referring me to a general practitioner whose capabilities pretty much end with flu shots and throat cultures????? I managed to get out into the parking lot before I broke down sobbing, more from frustration than anything else. I've talked to two other doctors about his behavior since then and they both said that it was just plain abusive.
Fortunately one of the other docs was able to refer me to a good oncologist who is able to see me next week. I found it of interest that when I made the appointment that the new doctor is in the same network as the asshole and the recep told me that she could see my test results were done and in the system so the new doctor would be able to see them.
Wait. The results are already back after less than a week and that asshole told me to wait a MONTH! And he obviously isn't going to call me with the results. I've never thought of suing a doctor before (and I've had a few really bad ones) but the emotional torment that this jerk has put me thru almost has me considering it. If I had any energy at all, I would.
So that's where we're at right now with the blood/stroke issues and hopefully the new oncologist will be better. For one thing, she's a woman. I've come to the conclusion that the only doctors who are going to help me are women. With one exception, the only doctors who have actually done anything except give up and refer me to someone else are women. I have the world's best rheumatologist, a lovely woman who is understanding of the fact that even tho I'm upright and not bleeding, I'm still very sick. I also have a new endo, a wonderful woman who has the mind of a scientist and the curiosity of a diagnostician. She's the one who got me off the bad thyroid med and onto one that works..........plus she discovered that I have diabetes. You know, I've had five endocrinologists in the past three years and not a one of them even tested my blood sugar. Turns out I have type 2 and she started me on meds right away. One is a new medication called Victoza that I inject into my abdomen every day (that's not nearly as bad as it sounds) that is designed to help with the absorption issues and keep the diabetes from getting worse. The great thing about it is that one of the side effects is weight loss and I've dropped 11 pounds in six weeks. My glucose is getting down into the 120 range now so all of her treatments are working. In addition to that she discovered my cholesterol is all out of whack and she's treating me for that AND helping with my blood pressure too. You can just imagine how thrilled I am to have found her! Seriously, I am more grateful to this woman than I can possibly say. She's also the one who referred me to the new oncologist and if she says that doctor is good, I'll trust her.
I saw my rheumatologist yesterday; three months earlier than I should have but that antibody they found in my blood can sometimes be present with rheumatoid arthritis. My rheumatologist ruled that out a long time ago but with the neuro and the bad oncologist both asking me if I have RA, I figured I'd better get in to see her. I'm glad that I did because she talked straight to me about what the oncologist might find and those are the first straight answers I've gotten since the blood test came back. Yes, it could be something like a non-Hodkins lymphoma such as Waldenstrom's Macroglobulinemia, but it could also be a "monocular gammopathy of undetermined significance" or "MGUS". That's more of a pre-cancerous condition that requires monitoring instead of a full blown terminal lymphoma like WM. There's no way of knowing anything for sure until the oncologist sees me and does her thing, but at least Dr H gave me some hope and some solid information so I'm not just wandering around scared to death and freaking out. And the endo gave me additional hope because she said she knows the new oncologist will behave like a proper hematologist and even if I don't have cancer, she'll be able to help me with my blood problems which will in turn make me feel a lot better in a lot of ways. Of course that's in theory only right now, but I'll take any kind of hope that I can get.
My biggest goal right now is to stop the strokes before I lose what I have left of my brain. The doctor asked me simple math questions and I discovered that I can't even assign a value to a number anymore. Numbers are beyond my comprehension as are directions and spacial relationships. I don't know right from left, or up from down, or greater than/lesser than. My short term memory is so shot that if I close my eyes for 30 seconds, when I open them I'm surprised at where I am! My memory won't even hold that information till I open my eyes again. That's disconcerting to say the least. There are a lot of other effects that are scary. It's also scary that these silent strokes are often found in Alzheimer's patients and my dad has Alzheimer's. The thought of losing my mind literally terrifies me. I can handle being sick and even dealing with cancer, but I don't think I can handle losing my ability to think.
There have been a lot of changes in my life over the past six months. I had a commissions waiting list that was over a year long that I've had to clear and am no longer able to accept custom orders right now. In fact, I really haven't done anything except finish up some mostly done pieces like the modern living room and the steampunk ice box. I did finally finish the custom Rosedale but I fear that unless things change it may be the last large house I ever build. My Tennyson is still in dry fit on the studio work table and it's fully furnished even tho it's only taped together and not even started. My goal is to finish it and build a Willowcrest for my BFF before I give up on 1:12 scale houses altogether. If they can get me back on my feet again, I'm going to be working in half scale houses and dressed furniture in both scales for my Etsy store inventory with the occasional quarter scale fairy house. It's a hugely reduced version of Deb's Minis but that's my goal and I'm doing everything I possibly can to reach it. Right now I can't even have the door to the studio open because it breaks my heart that I can't be in there, doing what I love to do best. However, for the past few months my days are pretty much the same: I go from bed to the couch and back again. There have been days when I couldn't even get out of bed.
I've lost touch with a lot of friends and am not online as much as I used to be. I'm still doing the Greenleaf Gazette newsletter because if I have to choose only one thing to do, the newsletter is it. Greenleaf is transitioning some servers so it hasn't been sent out for a couple of months but we've still got issues ready to go when GL is ready to send them. I've missed my friends but it's difficult for me to communicate even in the written form these days. I also forget that I haven't replied to emails....or I think that I have because I formulated the answer in my head but never typed it. Mostly I think I've withdrawn into myself because it's the safest place I can be. I've had some personal issues as well, including a betrayal that ripped my heart out and left me in pieces emotionally. So far 2011 has been a cruel and unforgiving year and since we're drawing close to its end, I don't have much confidence that it will get better. However, I do have hope that in the next three months I'll get some answers and maybe, just maybe, some treatment for the things that ail me so that I can start 2012 on a much better note.
It's taken me several days to type this all out and I'm still not sure if I've corrected all the aphasia type mistakes in it but if you read for content it should make sense. LOL! I'm not using Facebook as much as I had been because of their new "drink the kool-aid" invasion of privacy policies but you can find me on Google+ under Deb Meadows Roberts. There are quite a few of my friends who aren't on Google+ yet so it occurred to me that I could use my blog to keep folks updated and just post on FB and G+ when I've added to the blog. I'm going to try and keep things lighter than this post in the future--today is just to catch everyone up to real time and it's pretty depressing. I think the only joke that I've been able to come up with lately is telling my rheumatologist that if the oncologist expects to do a bone marrow biopsy on my super-dense bones, she's going to need a Black and Decker drill. But instead of only using my blog to post major events (like finishing a dolllhouse), I'll use it to replace Facebook and keep in touch.
It's good to be back on blogspot with you all. I've missed you.
Sunday, September 5, 2010
Where's Godzilla When You Need Him?
I'm back and look! {proudly pointing to my throat} I have a neck again!!! That big ole mess is finally out of there and I'm doing soooooo much better already. The incision is healing up nicely and from the looks of it, there's not going to be much of a scar either. There's still some swelling but even with that, it's so much thinner than it was when the thyroid was making me look like Mike Tyson.
My surgeon was great even tho it sounds like he had a tough time wrestling this monster out of my throat. The damned thing was 14 x 6.5 x 4.5 cm. That's almost 5 1/2 inches! Gawd, no wonder I was strangling myself every time I moved my head or arms. That was not a butterfly gland..........that was Mothra!!! It was under the sternum so I was right about my collarbone poking into it like a spear. Anyway, to get it out they had to strap my arms together behind my back and bend me like a backwards taco to push my chest up high enough to get in there. I was sore and bruised from my jaw all the way down to my boobs but I don't care. It was out and that's all that mattered!
There was a little problem with a floor nurse who thought she was a combination of HawthoRNe and House. {sigh} Spare me the attitude bitch. She blew out the vein in my hand by using a port left from the arterial line they used in surgery instead of using the IV line for my first round of pain killers. She didn't flush the line first and then she jabbed one syringe after another into it, shoving the plunger down so fast and hard that it was a blur. In case you don't know, morphine is really thick and even in an IV line it has to be administered very slowly to give it a chance to move thru the vein. Otherwise it sits there like peanut butter. It was bad enough that someone blew out the veins in my left wrist when they took out the arterial line there, but then the Marquis De Sade nurse really blew up the ones in my right hand. OMG, it hurt worse than my throat which is not exactly what pain meds are supposed to do. When the night nurse came on she took out the arterial port and took much better care of me. By the time the day nurse came back with her attitude and her threats of "if you don't do what I say I'll make sure they don't let you go home today", I was awake enough to be pissed. She actually got into an argument with my husband and stood over my bed to yell at him. If I'd had the strength I would have reached up and punched her in the throat. She finally sent a doctor in to settle the argument about whether or not I was under the care of a pulmonologist (just look on my chart.....he's down on the 7th floor if you want to talk to him) and I complained to the doctor about her, showed her my hand, and said I wanted out. NOW. Fortunately I was doing well enough that they let me go less than 24 hours after I got out of surgery.
{grinning} I can be such a bitch but I wasn't sleeping at all and I needed to be home where I could get some rest and I certainly didn't need the stress of a nurse from hell. I had a little fever later on that night, but with Prince Vicodin at my side, I was able to sleep and start recovering a lot faster. Bruce stayed home for a week to take care of me and made sure that I had lots of sherbet and ice water to help with the swelling.
It was the third day when I looked in the mirror and saw something that I hadn't seen in a very long time..........there was a sparkle and clarity in my eyes! And my skin tone looks better too! Even tho it's only been a few days on synthroid I'm doing really well with it. Now if I can just convince my endo to keep me on the high side of normal, I'll be great.
Oh, I almost forgot to tell you about the pathology report. Surprisingly the nodules all came back clear. I wa so not expecting that since the nodules were all full of microcalcifications and that's what they had told me held about an 80% chance of cancer. But they were clear and and the lymph node they removed was also benign. But deep down in the tissue, they found a little lesion of papillary cancer. I knew it was in there somewhere! It was small enough that they couldn't do a conclusive test but with the benign lymph node, they pronounced me cancer free and I don't have to have radiation. Yay!!!!! You know that I want to go find every doctor who tried to blow me off and kick them in the er, um, knees. If I hadn't kept fighting every inch of the way about this, they never would have found it before things turned really bad. Yep, I'm a fighter and that makes me a survivor too!
It's been such a long, hard fight with this damned thyroid that I feel like a warrior at the end of a war......sitting in the battlefield and catching my breath before I get up and head back to the business of daily life. But I can look down and still breathe, and I can lift my arms over my head and not strangle myself anymore. The part Bruce likes best is that I don't snore anymore. LOL! There are still a lot of things that I need to deal with but at least the thyroid isn't one of them. It's the biggest hurdle I've had to take medically and I know that things will get better now. Being able to breathe is awesome!
Of course I can't just sit around doing nothing for three weeks while I wait for my incision to heal up enough to go play with sawdust and glue, so I've been doing some puttering. I need lots of flower arrangements and potted plants for my Tennyson and that's something that I can do on a lap tray with some bits of flowers, leaves, pots and a hot glue gun. I may have gotten a little carried away but here's what I did........a little bit of everything from tiny potted plants to hanging baskets, to an oriental carriage for a lawn ornament.
Then when I got bored with plants, I made a red checked table cloth, some potholders, a folded dish towel and a "tossed on the counter" dish towel for my best friend's Laurel. She's doing the kitchen with that fabulous set of retro table, chairs and step stool all in red so these are perfect. I made her leave me the table so I could get the table cloth positioned the way she wanted it to show off the chrome edges of the table under it. I think I'll make her some cafe curtains to go with it tomorrow.
My surgeon was great even tho it sounds like he had a tough time wrestling this monster out of my throat. The damned thing was 14 x 6.5 x 4.5 cm. That's almost 5 1/2 inches! Gawd, no wonder I was strangling myself every time I moved my head or arms. That was not a butterfly gland..........that was Mothra!!! It was under the sternum so I was right about my collarbone poking into it like a spear. Anyway, to get it out they had to strap my arms together behind my back and bend me like a backwards taco to push my chest up high enough to get in there. I was sore and bruised from my jaw all the way down to my boobs but I don't care. It was out and that's all that mattered!
There was a little problem with a floor nurse who thought she was a combination of HawthoRNe and House. {sigh} Spare me the attitude bitch. She blew out the vein in my hand by using a port left from the arterial line they used in surgery instead of using the IV line for my first round of pain killers. She didn't flush the line first and then she jabbed one syringe after another into it, shoving the plunger down so fast and hard that it was a blur. In case you don't know, morphine is really thick and even in an IV line it has to be administered very slowly to give it a chance to move thru the vein. Otherwise it sits there like peanut butter. It was bad enough that someone blew out the veins in my left wrist when they took out the arterial line there, but then the Marquis De Sade nurse really blew up the ones in my right hand. OMG, it hurt worse than my throat which is not exactly what pain meds are supposed to do. When the night nurse came on she took out the arterial port and took much better care of me. By the time the day nurse came back with her attitude and her threats of "if you don't do what I say I'll make sure they don't let you go home today", I was awake enough to be pissed. She actually got into an argument with my husband and stood over my bed to yell at him. If I'd had the strength I would have reached up and punched her in the throat. She finally sent a doctor in to settle the argument about whether or not I was under the care of a pulmonologist (just look on my chart.....he's down on the 7th floor if you want to talk to him) and I complained to the doctor about her, showed her my hand, and said I wanted out. NOW. Fortunately I was doing well enough that they let me go less than 24 hours after I got out of surgery.
{grinning} I can be such a bitch but I wasn't sleeping at all and I needed to be home where I could get some rest and I certainly didn't need the stress of a nurse from hell. I had a little fever later on that night, but with Prince Vicodin at my side, I was able to sleep and start recovering a lot faster. Bruce stayed home for a week to take care of me and made sure that I had lots of sherbet and ice water to help with the swelling.
It was the third day when I looked in the mirror and saw something that I hadn't seen in a very long time..........there was a sparkle and clarity in my eyes! And my skin tone looks better too! Even tho it's only been a few days on synthroid I'm doing really well with it. Now if I can just convince my endo to keep me on the high side of normal, I'll be great.
Oh, I almost forgot to tell you about the pathology report. Surprisingly the nodules all came back clear. I wa so not expecting that since the nodules were all full of microcalcifications and that's what they had told me held about an 80% chance of cancer. But they were clear and and the lymph node they removed was also benign. But deep down in the tissue, they found a little lesion of papillary cancer. I knew it was in there somewhere! It was small enough that they couldn't do a conclusive test but with the benign lymph node, they pronounced me cancer free and I don't have to have radiation. Yay!!!!! You know that I want to go find every doctor who tried to blow me off and kick them in the er, um, knees. If I hadn't kept fighting every inch of the way about this, they never would have found it before things turned really bad. Yep, I'm a fighter and that makes me a survivor too!
It's been such a long, hard fight with this damned thyroid that I feel like a warrior at the end of a war......sitting in the battlefield and catching my breath before I get up and head back to the business of daily life. But I can look down and still breathe, and I can lift my arms over my head and not strangle myself anymore. The part Bruce likes best is that I don't snore anymore. LOL! There are still a lot of things that I need to deal with but at least the thyroid isn't one of them. It's the biggest hurdle I've had to take medically and I know that things will get better now. Being able to breathe is awesome!
Of course I can't just sit around doing nothing for three weeks while I wait for my incision to heal up enough to go play with sawdust and glue, so I've been doing some puttering. I need lots of flower arrangements and potted plants for my Tennyson and that's something that I can do on a lap tray with some bits of flowers, leaves, pots and a hot glue gun. I may have gotten a little carried away but here's what I did........a little bit of everything from tiny potted plants to hanging baskets, to an oriental carriage for a lawn ornament.
Then when I got bored with plants, I made a red checked table cloth, some potholders, a folded dish towel and a "tossed on the counter" dish towel for my best friend's Laurel. She's doing the kitchen with that fabulous set of retro table, chairs and step stool all in red so these are perfect. I made her leave me the table so I could get the table cloth positioned the way she wanted it to show off the chrome edges of the table under it. I think I'll make her some cafe curtains to go with it tomorrow.
I'm still not up to writing much and I should be laying on the couch playing Bookworm on Game Lounge right now but I remembered that I hadn't updated my blog after the surgery. So I'm going back to the couch now that y'all have the latest news. Thank you all for the prayers, positive thoughts and whispered spells for me. I know that made a huge difference in how this all came out.
Sunday, August 22, 2010
50 Ways to Leave Your Liver
Oh wait, wrong body part. That should be "50 Ways to Tell Your Thyroid to Get the Hell Out". Or "Hit the Road You Jacked Up Gland". Or even "Breaking Up Isn't So Hard To Do".
You get the idea. As the surgery date approaches (Monday!!), I'm sooooo eager to get it done. I'm not nervous about the surgery but then surgery has never bothered me. This is my third big one and I have the same attitude about it as I have the others.................................I get to take a nap!!!! Woooooooohoooooo!! They say it will take about 3 hours and I told them to take their time. The longer I'm knocked out, the better nap I'm gonna get.
Insomniacs have a different way of looking at things and we consider sleep to be a commodity more precious than gold. So knowing for sure that I'm going to be genuinely, deeply sleeping for at least three hours is a dream come true. (no pun intended) Even the pain immediately after surgery doesn't really bother me much since I know I'll have the morphine button and that'll put me right back into blissful slumber. Aaaaaahhhhh..........to sleep but not to dream. Or roll over.
I can deal with the pain because it will be the pain of recovery and not the ongoing chronic pain that I thought I'd have to live with for the rest of my life. I'm looking forward to being able to look down and not strangle myself, or turn my head and not feel the world start to spin. I'll be able to lay on my right side without my collarbone shoving further into that tender gland. And maybe, just maybe, the red triangle under my skin at the base of my throat will go away. That one is still a mystery to every doctor I've asked about it but it showed up the same time the nodules started to grow deeper and it's gotten bigger and redder with time. I've been worried because in the past few weeks it's turned purple on the edges of the right side but we're almost to the finish line so I'm not going to stress it. I'm just hopeful that it will go away with the thyroid. Most of all I can stop worrying about how busy that cancer is inside me.
I'm ready. Oh dear gawd am I ever ready! People that I've talked to in the medical profession over the past couple of weeks seem surprised that I'm so eager to have surgery, but if they knew what I'd been living with and the long and torturous journey to get to this point, I think my attitude would make more sense to them. But I tell them that I've always believed that if something causes me pain and doesn't work then it should be removed from my life. Like my first husband. {cackle} Seriously tho, I felt the same way about my hysterectomy. I had been in constant pain and nothing worked right anymore. I started thru menopause when I was 27 and by the time I was 33, I was a wreck. I was having hard periods 21 days out of 27. Talk about terminal PMS! OMG, it was a nightmare on wheels. One funny doctor decided to put me on a cocktail of Premarin and Prozac. Oh yeah, that worked. I still wanted to kill people but I was okay with it. As you might have guessed this thyroid issue is not the first time I've had to fight with a long series of doctors before finding one who believed in actually fixing things.
But the point of that story is that I'm going into this surgery with the same attitude I had then. Something inside me is broken and is not fulfilling its purpose. It's painful and debilitating and my body would be better off without it. I can live with taking a pill a day and be delighted to have another hormone perfectly regulated after a lifetime of more ups and downs than a roller coaster at Six Flags. When I had my hysterectomy, I spent the first day sleeping as much as I could and using the morphine to control the pain so it didn't tax my strength anymore than necessary. On the second day I got up, got dressed and went outside for a smoke. By the time the doctor came in, I was perched on the edge of my bed, swinging my feet and demanding that the IV be taken out of my arm so I could go home. And I did because I really, truly felt better that day than I had in years. When you've been rock-bottom sick, the pain of recovering from surgery is a walk in the park.
I'll do the same thing this time because I know that as soon as they take this time bomb out of my throat, I'm going to feel better immediately. If the cancer has spread to the lymph nodes I'll deal with that too but I'm feeling confident that it's confined to the nodules in the thyroid and once that's out, I'll move on completely cancer free. I may have a sore throat and a drainage tube in my neck but I love sherbet and yogurt as a diet and my hubby will be the one taking care of my incision for me. A week of that and I'll be back on top of my game.
I have some fabulous incentive to get back on my feet quickly with the dual build of the 1:12 Rosedale and the 1:24 Rosedale. I'm so excited about those houses that I can't stop working on them! I can't wait to see how they look when they're finished. After those are done, I'm building my own 1:12 Tennyson (which is in dry fit and completely furnished already) and the 1:24 Tennyson just for fun. I'm also going to be dressing 1:24 furniture for a new line at Deb's Minis and I'm excited about that too. Oh, and then there's the Willowcrest that I'm going to build for my best friend and a possible Glencroft for a client, plus as many of the new Greenleaf half scale houses as I can. I've fallen in love with half scale and it's like discovering miniatures all over again. I feel fresh and renewed when I work in this scale which is enough to make me want to move mountains to get back to my studio as soon as I can.
So I'll take it easy and rest and do all the things the doctors tell me to do so I can recover but I'll kick ass on this. There may be complications with the fibromyalgia and the hormonal issues of the thyroid removal (kind of like all thyroid disease symptoms crammed into one for about six weeks) but I'll deal with that as it comes and I'm sure that I'll get thru those days as well. The main thing is that this horrid, toxic, cyst-filled, negative, screwed up gland is on its way out!
In the words of Dr. Suess, "The time has come, the time is now. Just go, go, go! I don't care how." But for the sake of any sentiment for a body part that has been with me all my life, I'll include a little break up song to walk it out the door.
Take it away Muppets!!
Sunday, August 1, 2010
Butterflies Are Free
Join in on the celebration dear friends! The often longed-for event is about to happen..............the thyroid surgeon at University hospital said that my thyroid needs to come out and the surgery is scheduled for the 23rd! {happy dancing} Yay! I'm soooooooo happy and soooooo relieved. After almost three years and 13 doctors, someone has seen the light and said, "What's a place like this doing in a nice girl like you?"
It was relatively simple too. First his intern and his resident came in to do an initial eval (I swear that resident looked just like Doogie Howser and was just as smart), and then the big man came in. He grasped my thyroid from behind, pressed his fingers against the middle of my throat and told me to swallow. My response was "Urrgk" just like it always is when doctors do that and he said, "Well, that's good enough for me. Let's get that thing out of there". I almost swooned. He even laughed at me when he asked when I wanted to do the surgery and I said, "Tomorrow is good for me. Is that good for you?". LOL! I swear, there has never been anyone so eager to get their throat cut than I am!
Dr R. said that he didn't understand why it wasn't removed a long time ago. And that's what the pulmonologist said when I saw him on Tuesday. It's the same thing that my rheumatologist and back doctor have also said. Unfortunately, none of them were in a position to do anything about it and the ones who were (like the two previous endos and the quack internist and his PA) kept saying "It's fine. Quit whining." And let's not forget the other "surgeon" that the quack sent me to (who turned out to be a plastic surgeon!) who said that he was going to classify it as elective surgery. Um, I don't think that being able to breathe and swallow should be considered elective. Ah well, karma is a bitch and it will eventually catch up to all of them.
There's more positive news about surgery and this is the part that helps me to make sense of the whole thing. Maybe it's my Virgo tendency to rationalize things, but I believe that there is a purpose for everything. I believe that in each turn of the Wheel, there are tasks to be done and lessons to be learned. It's that belief that keeps me from giving up because I know that when my time comes to go to the Summerlands again, I'll be able to tell the Ancient Ones what I've learned from this turn of the Wheel.
After the surgeon agreed to take my thyroid out, he asked me if I would be willing to donate my thyroid to a cancer research study currently underway at University. I knew immediately what he was talking about because I had originally tried to get into see the doctor who is heading up the study but he wasn't taking patients because of his research work. I've read a lot about this research Dr H is doing and he's focusing on the molecular and cellular construction of thyroid nodules and tumors that lead to thyroid cancer. As soon as Dr R mentioned the study, I could see the gleam in his eye and knew how interesting my thyroid could be to them with all its nodules in so many stages of cancer evolution. I lost count of how many nodules I have after 15 so this is like giving a kid a sack of marbles to play with. Some of them are more than 20 years old and some of them are brand new. Some are fibrous and some are fluid and some are a mixture of both. There are some with just a few microcalcifications and others that have a "snowstorm" of them and some without any at all. It's like a researcher's amusement park in there! And since my thyroid disease started when I was 8 years old and was passed down from my grandmother and my mother, it gives them a chance to work with genetics as well as cellular structure.
Needless to say, I told them "Yes!" and gave them about half a pint of blood and some other samples to go to the research lab. After the surgery, my thyroid will go to the pathology department first so they can verify how far the cancerous cells have spread and then the whole gland will go off to the research lab to be studied.
I'm really happy that I'm going to be able to contribute something that might help the study of thyroid cancer and could even be helpful in predicting what type of nodules have the potential to turn malignant. That's the kind of information that could result in early detection and new, proactive processes to remove thyroid nodules before they turn rogue. Maybe I'm grasping at straws here to make sense of it all, but in my mind I feel like perhaps this is why I've had to deal with this rotten little gland for so long..........it wasn't the right time or the right place yet. My journey has been long and frustrating to say the least, but if I hadn't gone thru all that I never would have finally ended up at a teaching hospital looking for help. And now that I have, my rotten little butterfly gland can be a teaching tool to help other people. If that's what it's all about, then every step of the journey has been worthwhile.
They'll be putting me on thyroid replacement immediately which is excellent news! Most thyroid surgeons have the patient wait 6 weeks until they're completely euthyroid before starting that and the last thing I need is to be more of a slug than I am now. Getting the hormone level regulated right away will help the recovery go faster and make for a more balanced me. Also in the "great news" category is the fact that I won't need radiation unless they see something out of the ordinary with my lymph nodes.
{huge sigh of relief} I know that this isn't going to fix all my problems, but it's going to go a long way toward making me feel better. It'll get the pressure off of my collarbone and the fibromyalgia trigger point there which will hopefully help get my fibro out of constant flare. Depending on how big it's grown under my sternum, it might open up some more space for my lungs in there. It will definitely get rid of the pain in my throat and collarbone and I'll be able to turn my head, sleep on my side, raise my arms and swallow easily! I've been getting really tired of strangling myself every time I raise my right arm! LOL! So even with the other issues, this is still going to be one of the best things that could happen to me. I get the feeling that the doctors are going to be pretty surprised at how much better I feel right away.
In other news, I had the first spinal shots on Monday. They didn't use the "twilight" anesthesia.....they just plain knocked my happy ass out for it. I'm okay with that coz I didn't really want to be awake while they stuck needles in my spine. They didn't do the 60 lumbar facet shots as originally planned. Instead they opted to go for the big bundle of nerves at the S1 joint and my right hip. They also did my hands while I was there. Unfortunately, the back shots didn't do any good at all. I woke up in pain from laying on my stomach and then on my back, and after standing up for a few minutes, all the old pain hit just as sharp as it was before. The shots in my hands were helpful, but not nearly as much as they have been in the past. (this was my third round of cortisone shots in my hands) So that's a little disappointing but it was just the start. The doctor said we'll follow up in a couple of weeks and talk about doing a second and third round of shots. They're not real optimistic because they think it's my kidney and not my back, but we'll see what happens. Ya know, as long as they knock me out, I don't mind if they want to do more shots. It was only for an hour, but damn, that was the best nap I've had in a long, long time!!
On Tuesday I saw the pulmonologist for the first time. I went in with a chip on my shoulder and told him that if he says I'm fat, he's gonna get hit. That got his attention! LOL! But he *listened* to me and paid attention to what I told him. He did a chest xray which came back nice and clean. He said that there's still a chance of emphysema but nothing that shows in the xray. (and that's the second one I've had come back clean) He said that the xray does show decreased lung capacity which accounts for my low oxygen saturation and it could be due to muscle weakness caused by a long history of thyroid disease and the fibromyalgia. I'll have a ct scan and a VQ scan done soon so they can check for sure about emphysema. The CT scan will also see how far into my chest the thyroid has grown so that's doubly helpful. I think the only thing that worries me about the surgery is that "worst case scenario" where they'd have to crack my sternum to get it all. But the CT scan should give them a good idea of how much is in there and that will put my mind at ease before the surgery. The pulmonologist also gave me the green light for surgery as far as my breathing is concerned so that's good too. My pre-op screening is tomorrow and they'll give the final approval that my body is up for it.
So there are still a lot of things going on, but my biggest concern has always been the thyroid. I don't care what the doctors say, I know it can't be healthy to have this thing inside me, squatting like a malignant toad in the middle of my throat and sending it's toxic hormones throughout my body. I've been putting up with it's horrid personality since I was a child and I'm really just tired of that shit. It's also gotten very, very crowded in here and I think that serving an eviction notice on it is the best thing ever. So let's all do a little happy dance together and come the 23rd, we'll have a huge virtual party to celebrate getting my throat cut!
It was relatively simple too. First his intern and his resident came in to do an initial eval (I swear that resident looked just like Doogie Howser and was just as smart), and then the big man came in. He grasped my thyroid from behind, pressed his fingers against the middle of my throat and told me to swallow. My response was "Urrgk" just like it always is when doctors do that and he said, "Well, that's good enough for me. Let's get that thing out of there". I almost swooned. He even laughed at me when he asked when I wanted to do the surgery and I said, "Tomorrow is good for me. Is that good for you?". LOL! I swear, there has never been anyone so eager to get their throat cut than I am!
Dr R. said that he didn't understand why it wasn't removed a long time ago. And that's what the pulmonologist said when I saw him on Tuesday. It's the same thing that my rheumatologist and back doctor have also said. Unfortunately, none of them were in a position to do anything about it and the ones who were (like the two previous endos and the quack internist and his PA) kept saying "It's fine. Quit whining." And let's not forget the other "surgeon" that the quack sent me to (who turned out to be a plastic surgeon!) who said that he was going to classify it as elective surgery. Um, I don't think that being able to breathe and swallow should be considered elective. Ah well, karma is a bitch and it will eventually catch up to all of them.
There's more positive news about surgery and this is the part that helps me to make sense of the whole thing. Maybe it's my Virgo tendency to rationalize things, but I believe that there is a purpose for everything. I believe that in each turn of the Wheel, there are tasks to be done and lessons to be learned. It's that belief that keeps me from giving up because I know that when my time comes to go to the Summerlands again, I'll be able to tell the Ancient Ones what I've learned from this turn of the Wheel.
After the surgeon agreed to take my thyroid out, he asked me if I would be willing to donate my thyroid to a cancer research study currently underway at University. I knew immediately what he was talking about because I had originally tried to get into see the doctor who is heading up the study but he wasn't taking patients because of his research work. I've read a lot about this research Dr H is doing and he's focusing on the molecular and cellular construction of thyroid nodules and tumors that lead to thyroid cancer. As soon as Dr R mentioned the study, I could see the gleam in his eye and knew how interesting my thyroid could be to them with all its nodules in so many stages of cancer evolution. I lost count of how many nodules I have after 15 so this is like giving a kid a sack of marbles to play with. Some of them are more than 20 years old and some of them are brand new. Some are fibrous and some are fluid and some are a mixture of both. There are some with just a few microcalcifications and others that have a "snowstorm" of them and some without any at all. It's like a researcher's amusement park in there! And since my thyroid disease started when I was 8 years old and was passed down from my grandmother and my mother, it gives them a chance to work with genetics as well as cellular structure.
Needless to say, I told them "Yes!" and gave them about half a pint of blood and some other samples to go to the research lab. After the surgery, my thyroid will go to the pathology department first so they can verify how far the cancerous cells have spread and then the whole gland will go off to the research lab to be studied.
I'm really happy that I'm going to be able to contribute something that might help the study of thyroid cancer and could even be helpful in predicting what type of nodules have the potential to turn malignant. That's the kind of information that could result in early detection and new, proactive processes to remove thyroid nodules before they turn rogue. Maybe I'm grasping at straws here to make sense of it all, but in my mind I feel like perhaps this is why I've had to deal with this rotten little gland for so long..........it wasn't the right time or the right place yet. My journey has been long and frustrating to say the least, but if I hadn't gone thru all that I never would have finally ended up at a teaching hospital looking for help. And now that I have, my rotten little butterfly gland can be a teaching tool to help other people. If that's what it's all about, then every step of the journey has been worthwhile.
They'll be putting me on thyroid replacement immediately which is excellent news! Most thyroid surgeons have the patient wait 6 weeks until they're completely euthyroid before starting that and the last thing I need is to be more of a slug than I am now. Getting the hormone level regulated right away will help the recovery go faster and make for a more balanced me. Also in the "great news" category is the fact that I won't need radiation unless they see something out of the ordinary with my lymph nodes.
{huge sigh of relief} I know that this isn't going to fix all my problems, but it's going to go a long way toward making me feel better. It'll get the pressure off of my collarbone and the fibromyalgia trigger point there which will hopefully help get my fibro out of constant flare. Depending on how big it's grown under my sternum, it might open up some more space for my lungs in there. It will definitely get rid of the pain in my throat and collarbone and I'll be able to turn my head, sleep on my side, raise my arms and swallow easily! I've been getting really tired of strangling myself every time I raise my right arm! LOL! So even with the other issues, this is still going to be one of the best things that could happen to me. I get the feeling that the doctors are going to be pretty surprised at how much better I feel right away.
In other news, I had the first spinal shots on Monday. They didn't use the "twilight" anesthesia.....they just plain knocked my happy ass out for it. I'm okay with that coz I didn't really want to be awake while they stuck needles in my spine. They didn't do the 60 lumbar facet shots as originally planned. Instead they opted to go for the big bundle of nerves at the S1 joint and my right hip. They also did my hands while I was there. Unfortunately, the back shots didn't do any good at all. I woke up in pain from laying on my stomach and then on my back, and after standing up for a few minutes, all the old pain hit just as sharp as it was before. The shots in my hands were helpful, but not nearly as much as they have been in the past. (this was my third round of cortisone shots in my hands) So that's a little disappointing but it was just the start. The doctor said we'll follow up in a couple of weeks and talk about doing a second and third round of shots. They're not real optimistic because they think it's my kidney and not my back, but we'll see what happens. Ya know, as long as they knock me out, I don't mind if they want to do more shots. It was only for an hour, but damn, that was the best nap I've had in a long, long time!!
On Tuesday I saw the pulmonologist for the first time. I went in with a chip on my shoulder and told him that if he says I'm fat, he's gonna get hit. That got his attention! LOL! But he *listened* to me and paid attention to what I told him. He did a chest xray which came back nice and clean. He said that there's still a chance of emphysema but nothing that shows in the xray. (and that's the second one I've had come back clean) He said that the xray does show decreased lung capacity which accounts for my low oxygen saturation and it could be due to muscle weakness caused by a long history of thyroid disease and the fibromyalgia. I'll have a ct scan and a VQ scan done soon so they can check for sure about emphysema. The CT scan will also see how far into my chest the thyroid has grown so that's doubly helpful. I think the only thing that worries me about the surgery is that "worst case scenario" where they'd have to crack my sternum to get it all. But the CT scan should give them a good idea of how much is in there and that will put my mind at ease before the surgery. The pulmonologist also gave me the green light for surgery as far as my breathing is concerned so that's good too. My pre-op screening is tomorrow and they'll give the final approval that my body is up for it.
So there are still a lot of things going on, but my biggest concern has always been the thyroid. I don't care what the doctors say, I know it can't be healthy to have this thing inside me, squatting like a malignant toad in the middle of my throat and sending it's toxic hormones throughout my body. I've been putting up with it's horrid personality since I was a child and I'm really just tired of that shit. It's also gotten very, very crowded in here and I think that serving an eviction notice on it is the best thing ever. So let's all do a little happy dance together and come the 23rd, we'll have a huge virtual party to celebrate getting my throat cut!
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