My Blood Just Might Be Slightly More Interesting Than Yours

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Vast knowledge makes you strong.  A little knowledge is a dangerous thing.  My dad used to say that last bit.  And it follows that if you believe something, it is very real in its consequences.  So if I believe my left foot is possessed by satan I might be inclined to cut it off.  Even though my original notion was probably wrong, I still end up hopping about on one foot.

I’m sure there’s a miraculous point in there somewhere, although it could be simply a tangent my brain took off on when I remembered my great love of medical dictionaries and encyclopedias in my youth.  Those books have been replaced by Google.  I had a mothers medical book when my kids were small and was able to diagnose them with every childhood affliction going.  Now there are millions of new conditions so I have great empathy for todays parents and their boggled minds.

I still research diseases and random symptoms and come to wild conclusions.  Then I go to a real doctor to be assured that I am not in immediate danger of dropping dead.  So far they have all been very accommodating.

The condensed version of my medical history is just as likely to lull you in to a coma as the detailed one, so I will skip over both of them and jump right to the diagnosis.  IgG4.

Yes, of course, I could not have something mundane and ordinary.  IgG4 is a rare systemic fibro-inflammatory disorder.  Here is what I know about it, even though I have googled these facts and realize you are not supposed to blindly believe everything you google.  Hasn’t stopped me yet.

Immunoglobulin G is an antibody found in blood and extracellular fluid which controls infection of body tissues.

By binding many kinds of pathogens such as viruses, bacteria, and fungi, IgG protects the body from infection, neutralizes toxins and helps maintain food tolerance by the immune system.

Inflammation is a result of infection.  

Okay.  The original specialist I saw no doubt said all this to me because he wrote it all in a report which I didn’t see until very recently.  Two years later.  All I heard was NOT CANCER blah blah blah.  He said he didn’t know the cause of the infection or the inflammation, gave me heavy-duty antibiotics and then a course of prednisone, and since neither made any difference suggested we forget about it.

The inflammation never went away so my doctor and I thought a follow-up visit in a little over a year would be a good idea.  Same clinic, different doctor, and it’s like he never read my file and started over again with all the same tests.  Eventually he didn’t know what to do with me next and referred me to a lung specialist.  I learned more in that one visit to them than I figured out from him in six months.  They are the ones who showed me the original doctors report.  They sent me for blood tests and then referred me to a hematologist.  I saw her on the 3rd of August and she was wonderful, even though she sent me to a lab to have seven more vials of blood taken so they can analyze the hell out of it.

Her diagnosis, unless she finds anything new, IgG4.  Treatment for now – none.  Steroids could cause more problems than they solve so no point in going that route yet.

The inflammation hasn’t spread much except to a lymph node behind my esophagus and a couple in my lungs.  Any organ in the body could be affected.  It seems to be a little unpredictable.  Fibrosis is a possibility.  Not a lot of studies have been done on this yet and there are differing opinions. But really, I am done losing sleep over it.  Skin rashes and thyroid problems and type 2 diabetes are all related and I remember saying once I thought whatever was going on was a systemic thing and holy crap, I was right.  Maybe everything is systemic, I don’t care, I still think I’m smart.

On Wednesday I’m going to see a dermatologist on the hematologists recommendation.  Then I would like to do what the original specialist suggested and forget about it.

How’s that for a plan.

 

Randomness on a Weekday

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Normally I would be raising my hand for the not-leaving-the-house bit, but I was up before the alarm today.  Good thing, because I forgot to set it.  I’m getting rather good at driving to strange parts of the city  to see specialists but parking stresses me out.

Patient parking in the lot was full, so I parked a couple of rows over in what might have been a place where one needs a permit, but it wasn’t marked reserved so I decided to tempt fate and abandon my car there and walk around to the other side of the building where I would not be able to see it and then proceed to obsess over all the possible outcomes of this decision.  Towed away would be the worst.  Hefty fine, nasty note, slashed tires.  I hate my brain when it thinks up dumb things.

Incredible as it may sound to sane people, I was more worried about my car than about the results of my MRI.  So the doctor telling me everything was fine and it’s just a small fatty benign tumour about which nothing needs to be done, was almost anticlimactic.  I could not wait to get out of there.

And there my car was, just where I left it, unmolested and not the least bit traumatized.

Now I’m back home waiting for the dishwasher door repairman.  Yesterday I saw my MD (have I mentioned how much I like her, despite the fact that she keeps finding stuff wrong with me?) and she was almost as thrilled as I am by the fact that I have dropped my weight by 20 pounds.  Imagine what I could do if I actually put real effort in to this!  But I know me, so I will just continue to monitor my blood sugar readings and not eat stupid things.  If I make up more rules than that I know for sure I will break them.

Hope your week is going well and your car doesn’t get towed and you weren’t too offended by the F word up there.  I don’t know why it makes me laugh.  Maybe there’s a medical reason.

Room Temperature

 

imageHaha!  That’s my feet sticking out from underneath a throw.  If you’re thinking I’ve run out of mesmerizing topics 13 days in to this January blog-a-day thing I’ve got going on, you might be right.

But I was sitting here in my 19 degree C house admiring my new fuzzy-on-the-inside socks when it occurred to me that they are worth sharing with the world.  Hey, it’s late and I’m tired, and I’ve had one of those days.  So you get sock sharing.

Early this afternoon I went for a follow-up appointment at the ENT Clinic at the University Hospital to discuss the results of the ultrasounds and needle biopsies on my neck.

The waiting room was crowded and hot and I had my winter coat over my arm for almost an hour.  My chair was right beside the reception desk so I got to hear many one-sided phone conversations from there and from rude people on cell phones, plus people talking and a hanging television screen had the sound on.  I’m always afraid in these situations that I won’t hear my name being called.  Then I imagined what it might be like to have a hearing aid and have all these sounds amplified.  Hell, more or less.

The thermostat in the exam room read 24.8 when I got in there.  Then it went up to 24.9.  When it reached 25 I imagined what it might be like to spontaneously combust.  At 25.1 I considered stripping and lying bare skinned on the floor tiles.  It was 25.3 when I left.  Gawd only knows what it’s at now.

I’ve been seeing Dr. Rizk.  And yes, it rhymes with risk.  Once again everything has come back with all kinds of horrible things ruled out, so we know what it isn’t, but nobody knows for sure what it IS.  Or what these lumps might develop into given time.  So my options are to keep showing up for tests and check ups ad infinitum or to have them surgically removed and be done with them.  He told me to go home and think about it.

I also got a flu shot today.  And some toiletries and these amazing slipper socks.  Never before in my life have I had a problem with my feet getting cold.  I’m that person who sleeps with her feet out from under the covers.  I have put bare feet in snow boots and not complained of the cold.  But lately things have changed.  Poor circulation maybe?  Every so often my feet will suddenly be freezing cold and I have to kick off my flip-flops and scrounge around for socks.

These new ones are perfect.  And yeah, gorgeous too. We turned the heat up to 20.  Because it’s winter and we are old. And possibly because W has complained once too often about being cold and I have suddenly developed some empathy on that subject.

And THEN (will this day and the recounting of it never end….) I looked up “room temperature” although what I really meant was ambient temperature and was astounded to discover Wikipedia says its 75 F or 24 C.  I am speechless.  How can anyone stand it that hot?

Okay, your turn. Tell me I’m cold-blooded and strange.  Or is it just where you live and what you’re used to and comfortable with that determines personal ambient temperature?

I’m going to bed now and these socks are coming off.  My feet feel like they’ve been in an oven.

Getting It Over With

sue fitz

In the middle of the night I woke up obsessing about something I do all the time.  I just want to get things over with.  Mostly bad, unpleasant things, but often simple ordinary ones too that aren’t horrible at all, until I make them dreadful by wishing them away.  Like the last two hours of a work shift.  The time spent on a plane.  A road trip across the country which has me wanting to whine like a little kid – “Are we there yet??”  Waiting to do something or be somewhere or be totally finished with something.  I’m not always very good at enjoying the journey.

This wasn’t a dream, because I was awake, tossing around,  trying to find a comfortable sleeping position.  I imagined myself way back before my life began, in another dimension, with a group of old souls about to embark on our next life adventure.  There was excitement, anticipation, high hopes, elation.  And me, saying, okay, I’m ready, let’s just get this over with.

Well, I don’t think I can be held totally accountable for the all the weird things my brain comes up with at three a.m.

This morning I drove in to the city to the clinic where my needle biopsy was booked.  I made a conscious effort to enjoy the drive through Old Strathcona.  Rush hour was over, the sun was shining, I hit lots of green lights.  Found a parking spot on P3, took the parking lot elevator to the main floor, walked to the patient elevators and zipped up to the second floor of the clinic.  Checked myself in and was told the doctor was running behind.  Cheerily said, hey, that’s okay, and sat down to wait.

And wait, and wait, and wait.  There was a television blatting away behind my head, so I moved to the front of the room to get away from it.  Many different nurses called the names of many different patients for many different doctors.  None of them were me.  They called for Amelia, and got no response.  Same thing with Audrey.  After that, every five minutes someone called for either Audrey or Amelia.  Finally Amelia sauntered in from God Knows Where.  And eventually Audrey and her husband showed up too.  Amelia didn’t take long to be seen, but Audrey took for flaming ever.  I began to blame Audrey for making my doctor get so far behind.  I imagined giving Audrey a little lecture on the importance of not leaving the waiting room. I wondered why Audrey was so damned special and didn’t lose her place in line.  I wondered if I could get away with leaving the waiting room to grab a coffee.  Stupid annoying Audrey did it.  I imagined my file had been misplaced and everyone had forgotten all about me.  What the hell were they doing to Audrey, anyway?  Amputating her legs?

Eventually Audrey returned with a huge cast on her arm.  I decided I shouldn’t hate her anymore.  Because obviously we weren’t seeing the same guy.  Finally, my name was called (two hours and many magazines later) and I was led down a three-mile long corridor to a little room where two medical students and a doctor introduced themselves to me and asked me lots of questions, gave me lots of information and asked me to read and sign a consent form for the procedure.  All three of them took turns poking and prodding at my neck.  ( Is there any discomfort?  Well there is now. )

I’ve had a needle biopsy before, many years ago, for my thyroid.  It wasn’t pleasant, but it wasn’t horrific either.  The doctor had to do it twice to get a sufficient number of cells.  So when the first student was wielding the needle with the doctor hovering over her shoulder giving her instructions and they decided it should be done again, I wasn’t really surprised.  The second student was more aggressive and less afraid to go deep, so her sample was good.  Yay.  Are we done yet?

I got a band-aid but no lollipop.  I was a good patient and helped in the training of two future medical professionals.  So good for me.  I got that over with.

Deep breaths.  Back through the clinic to the parking elevators, remembered where I left the car, paid twelve dollars to get it out of there, did some shopping in a store close to home and then after a quick lunch, crashed for a two hour nap.  All that useless hating on poor Audrey zapped a lot of energy I guess.

Tomorrow I will try yet again not to wish so hard for things to be over and done with.  It’s so pointless.  Everything ends, whether you wish for it or not.  Focus on the journey.  That’s probably how Audrey lives her life.

What keeps you going isn’t some fine destination, but just the road you’re on, and the fact that you know how to drive.  (Barbara Kingsolver)

This Different Me

sue fitzmaurice marjorie pay hinckley

Last night I slept for eleven hours.  It’s amazing what a good long sleep does for your outlook on life in general.

It’s been a while since I’ve felt like myself.  For one thing, I don’t want to write every day, even on days when there’s nothing of any consequence to write about.  Oh, hell, who am I kidding, that’s always been the norm here.  Now that I have something mildly interesting to talk about, I don’t feel like talking about it at all.  Apparently these days I prefer to sit down and stare off in to space with an empty head.  I suspect W is completely exasperated with me, because no matter how hard he tries I can always find a reason to be negative and bitchy.  I’m not so fond of this different me.  No doubt he isn’t either.

When I’m at work and some annoying person starts complaining about a random inconsequential minor stupid bit of nonsense (they’re all like that lately) I really would like to tell them to just please shut the F up.  I don’t care.  I’m sick.

My CT scan was done on the seventh of July, and now I have an appointment booked for August 11th at the University Hospital with an excellent doctor.

Surgical Oncology
Professor of Surgery
Divisional Director and Zone Section Head
Otolaryngology – Head and Neck Surgery

Does that not all sound excellent?  I’m sure I’m in excellent hands.  I should be feeling totally excellent.  Except that the ‘oncology’ word scares the living shit out of me.  He is also a plastic surgeon, so if half of my head has to be removed I’m sure he can build me something interesting to take its place.

The holiday that we’ve booked for two weeks with family in Ontario can go ahead as planned, leaving on the 26th of July and flying back on August 9th.  I have hours in the day when I completely forget about all of this.  What’s the point in worrying and imagining and dwelling on it, really.  I thought when I got to Day 16 of Jazzy and her happiness project and my life took this funny turn that I would have to put a hold on all her blather about happiness.  At least this different me realizes what a huge mistake that would have been.  I’ve had a couple of dark days but look, here I am.  I survived them.  I think life likes to hand you bad things you think you won’t be able to handle just to show you how strong you can be and that you can.

So until the middle of August, life is good.  We’ll have a fun holiday, a time to remember.  And perhaps after the middle of August life will still be good. Maybe it will just keep on getting better and better.  One way or another, life does go on.

See how weird this different me insists on being?  Seriously, stop it.  Okay.  I’m done.  Me too.

There’s not much more I can say on this topic anyway, since I didn’t ask any questions in the interests of ignorance being bliss.

Okay!  Has this bloggers block been broken?  Different me hopes it has.

Not Broken, Just Cracked

 

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Or a little bent, perhaps..  Maybe a LOT bent and cracked and scrambled and ready to shatter with one more shove.

So get out the glue.

A good life isn’t necessarily a big life, or a long life or even an “important” life.  Whatever it throws at me, I’m happy to be living mine.

Well, what a lot of blather that was.  I’m sure I could go on and on avoiding the point for much longer than this,  but here’s the reason I’m currently allowing myself to wallow a bit.

About six weeks ago I noticed some swelling just below my jaw on the left side of my face.  I thought it was a swollen gland.  I went on holidays and more or less ignored it.  Even convinced myself that it was going away.  Then I got more swelling up closer to my ear, and on the 12th of June went to see my doctor.  She suspected a blocked salivary gland, maybe even a stone, and told me to go home and suck lemons.  Really.  I love her.  She also gave me a lab requisition to book an ultrasound, but the lab told me this type of ultrasound is more specialized and has to be booked at a hospital.  I was eventually scheduled at a new clinic across from the University Hospital for June 24th.

I had the ultrasound done around one o’clock and then drove straight to work from there.  At four thirty my doctor’s office called to say they had the results back and my doctor would like to see me as soon as possible, could I come in tomorrow morning?  Yes I could.  And could I bring someone with  me?  What? Why?  Well, for support.  Dead silence while I tried to digest this.  Really?  Is it that bad?  I felt sorry for the person who had to make this phone call because they’re not supposed to tell you anything.  But sometimes by not telling you anything they tell you a lot more than you want to know.

I’ve already been through a very similar experience with my thyroid investigation, when I was called in to the doctor’s office very quickly to discuss the results.  That was over ten years ago.  I had to go for a needle biopsy after that.  Those results were fine, but because of some pre-cancerous growths I was given the option of having surgery to remove the unhealthy looking bits and ended up with practically all of my thyroid removed.

After this phone call I spent a restless evening (with the help of the internet) imagining every worst case scenario there is, and a few more after that.  I wore myself out.  So when I went in to talk to my doctor the next morning (on my own) and she told me the radiologist thinks this looks like it could be a cancerous lump, I was kind of numb to it all.  Yes, okay.  So what’s next?  Blood work and urinalysis, which I had done in the same building right away, and arranging for a CT scan to be scheduled.  There are two specialists she can refer me to when we have the results, depending on which one is able to see me first.

Then I went home.  And now we wait.

I phoned W and he says he will come home.  I know I must talk to my kids and my sisters, although I would prefer that they be oblivious to it all for as long as possible.  Worry is such a piece of crap thing, ruining your day with no good result because it doesn’t change a thing.

And it might be nothing.  IT MIGHT BE NOTHING.  I have no other symptoms.  I feel perfectly fine.  I admit I’m feeling rather sorry for myself and it feels therapeutic just to put it all into words for now.

But here’s some things that boost me up.  Maybe this is the glue I was talking about.  The morning of the 25th, (which was the day after what would have been my dads 100th birthday) when I got up to make coffee, there were three magnificent magpies strutting about in the backyard.  I have always considered magpies to be a very good omen.  They remind me of my mom and my family.  I haven’t seen any of these birds around here for weeks.  Just as I was leaving for the doctor’s office there were FIVE of them out there, on the lawn, on the garage, on the new fence.  Flapping and squawking and not flying away. They haven’t been back since, but they were there when I needed to see them.

I pulled out my type-written notes and re-read some of the things the psychic told me last July.  Things that didn’t really register at the time, but now seem to make perfect sense.  New female GP,  some problem with my neck,  June 2014, two specialists,  some sort of procedure, not life threatening, trust that you will be in very good hands, everything is going to go much better than anticipated.

Am I a superstitious fool to take great comfort in the appearance of some magpies and in these words?  I don’t care.  I do.

CT scan is now scheduled for the 7th of July.  That’s fast.  That’s good.  There are happy days to be grateful for in the meantime.