Saturday, October 15, 2011

Another dead end

I saw the new oncologist yesterday and as soon as she walked into the room she took off in a machine-gun speaking style, educating me about why I shouldn't be there.   She shoved me back to the neurologist saying that it's up to him to fix the strokes.  I pointed out the fact that my blood is turning into syrup and went over the related problems like the decreased oxygen saturation in my blood that has led to nasty things like pulmonary hypertension and potential organ failure.  Nope.  Not her problem.  She told me to go back and see the neuro for help with the strokes and find whoever else to fix the other problems but apparently nothing about my blood is her problem.  Silly me.  How did I not know that oncologists are Gods and we're not to trouble them by reminding them that they're also hemotologists? 

The good news is that I don't have cancer.  Yet.  What I have is MGUS (monoclonal gammopathy of undetermined significance).   It's a precursor to cancer so yeah, I have that to look forward to.   It's a half-ass celebration because while I don't have cancer now, I need to keep being tested for it because it's pretty much a matter of time.  But to be honest, I don't really give a rat's ass if I have cancer or not---at least if I did they'd finally *treat* something!  What I really care about is the fact that there is something every bit as deadly and every bit as horrible as cancer happening to me and I can't get one single doctor out of 27 to figure out what it is and do something about it.  Where in ANY medical journey does it say that it's okay to have 95 strokes without being treated for strokes?  Or an oxygen saturation of 77% without knowing the cause and treating it BEFORE my lungs, heart and kidneys give up?   And even tho I can be relatively certain that most doctors don't  care about me or my problems, I care considerably about the fact that my brain is turning into a turnip.

I'm confused because I went in there with a test result showing a spike in IgM.   I had the paper in my hand and while my brain isn't running on all six cylinders anymore, I do still know the difference between the M on the paper and the G that she says I have instead.  She says that her tests are more accurate.  And as for that bone survey, she said I can just get around to it whenever.  Okay, how about never?  Does never work for you because never works best for me.  I'm going to be too busy trying to find a doctor who can actually figure out what's going on with my blood and besides that, I can't afford another however-many-hundred-dollar copay that this bone survey scan is going to cost.  

The neuro didn't want me to come back for six months and had absolutely no intention of treating the strokes. The oncologist said that neurologists are always the ones who treat strokes so I have to talk to him about that. (I'd disagree with that because when my dad had two strokes, they called a hematologist, not an electrician)  And who treats the hypoxia (low blood oxygen saturation) when two pulmonologists and a cardiologist have given up if it's not the hematologist?   She didn't know but she's sure it's not her or anyone else in her specialty, as was verified by the first hematologist I saw.   So this was a very expensive trip down yet another dead end and now I'm back to where I was, except more tired, more sick, and more screwed up than before.

I'm sorry to sound so negative.  It seems to have become impossible for me to remain positive these days.  I found out one reason for that is because the EEG showed there's some damage to my brain in the area that controls emotion, and positive-thinking may be one of the casualties of the strokes...but as much as anything, I'm just tired and ready to give up.  There's no where else to go and I've run out of doctors and options, especially since none of those 27 doctors are willing to treat anything.    The oncologist wanted to know why my rheumatologist isn't treating me with immuno-suppressant drugs.  Um, because my rheumatologist thinks I'm too young to get tuberculosis?????   She and I talked about the a-i suppressive drugs a long time ago and the risks are way too high for the small benefits I'd get from them.   Yes my auto-immune system is a psychotic over achiever and no, killing it is not the answer.  The list of "did you?" and "Yes I did" is seemingly endless and there's no door marked Exit to get me out of this mess.  

So that's where things stand now.   Days of being too sick to get out of bed, a brain that looks like swiss cheese, too many medical issues to even think about, and there isn't a single doctor who wants to see me again for at least six months. 

Thursday, October 13, 2011

Losing a parent, losing ground, losing brain cells

About an hour after my last post I got a call telling me that my father had passed away.  There is so much that I want to say about him but I'm not quite ready yet.   Mainly I'm just happy that he can be at peace now but I miss him so much.  He had Alzheimer's so I've been missing him for a long time already but it's still hard to say the last goodbye.

The test results from the EEG came back today.  The dr said that there aren't any signs of seizures (yay!) but there is definitely a pattern of disorganized activity, more on one side than the other.  That's all indicative of the damage from the strokes.  Right now there's nothing being done about the strokes until we find what's causing my blood to turn to syrup and that will be up to the oncologist.

The rheumatologist called with her test results too.   The tests for RA were negative (just like we knew they would be) but the tests she did for monoclonal gammopathy weren't.   There was also another test that popped up showing signs of an active infection--except I don't have any infections; not even a sniffle or a hangnail.  So that's not necessarily a good sign but I told her to send the results to my new oncologist and we'll see what she makes of it.   At least she'll have the results of that IgM test from three different doctors all showing the same results (plus the one showing a pop in white cells which is so not good) so there won't be any doubt that yes, I do have a spike in immunoglobulin m.   Whether it's precancerous or cancer is still unknown but I see the oncologist on Friday and hopefully she'll get the process started to find out.

I'm open to any treatment right now.  I haven't been able to get out of bed for two days again because I've been so sick.  Every time I move a wave of nausea washes over me.   Seems like I lose a little more ground every day but then this has been a really rough and emotional week.  

Good night Daddy.  

Saturday, October 8, 2011

As long as I'm up

I'm having an EEG today because they want to make sure that I'm not having seizures in addition to strokes.  Suuuuuuuuuuuuure.   Why not.  So I'm up before the sun because there are some rules you have to follow before you have an EEG.

One is no caffeine.  *whimpering quietly*  I've weaned myself down to just one Mt Dew a day but I still get nasty-wicked headaches if I don't get my caffeine.  *checking the clock*  And it's going to be another 6 hours before I can have one.  That's a very long time to have one of these headaches.

The second is that for some reason they need you to be sleep deprived for the test.  That one mystifies me just a little bit but it's their party so I'll play along.   They said to go to bed two hours earlier than usual and get up two hours earlier than usual.  I did the math and that means that I only get 20 minutes of sleep, and that's only if it's a good night.  And to top it all off, I can't take pain meds because it could screw up the results.

This test was originally scheduled for last week but someone forgot to tell the tech so I went thru all this, got there and waited for an hour, and the tech never showed up.   Needless to say I wasn't a happy camper about it.  People who don't have insomnia have no clue what it means to ask an insomniac to give up sleep.   When you have insomnia, sleep is the most important thing in the world.  Hell, I don't even mind getting 60 shots in my back all at the same time because they knock me out for it and I get a good one hour nap!  Yes, I completely understand why Michael Jackson used anesthesia as a sleep aid.   To paraphrase a portion Stephen King's book "Insomnia", "Thousands of people die of insomnia every year  they just put "heart attack" or "suicide" on the death certificate."

If you've never had *chronic* insomnia you know exactly what I'm talking about.  Every precious second of sleep you can get is golden and every additional second that you lose is agony.  I'm not exaggerating about that either.  Insomnia is painful, especially if you have other issues too.  For me, sleep is the only way my body  can escape from pain and, more importantly, it's the only way my body can have any time to relax and heal at all.  It takes days, if not weeks, for me to completely recover from the effects of a night without sleep or even reduced sleep.  Since this is the second time in two weeks, it's twice as hard as it was last week.

There is the additional factor that the first major cold front of the year pushed thru this morning and there's freezing rain pelting the windows.  Neither Arthritis or Fibromyalgia are impressed with dramatic weather changes so my joints and my muscles all feel like we've gone ten rounds with Mike Tyson.

With any luck they'll get some useful information with this test.  I don't think I'm having seizures but who knows.  Even if they can capture some info about which parts of my brain aren't working correctly it would be helpful.  I just want to know that going thru this twice and paying a giant co-pay is worth it.  At this particular moment in time, I'm having some serious doubts but then again, I'd do just about anything for a Mt Dew and a two hour nap.

The longer I type, the sleepier I get so it's time to attempt moving around before the narcolepsy hits and I pitch face down onto the keyboard.  Perhaps I'll get in an hour or two of playing Neverwinter Nights before it's time to go.

Friday, October 7, 2011

It's not supposed to work that way

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.

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:

Degenerative Disc Disease
Carpal Tunnel (both hands)
Reynaud’s Syndrome
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
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.


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 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.