Thinking too much

I’m thinking I need a new tat or two when this is over. Maybe a zipper? And something more spiritual. They just called to confirm the surgery. Like I’m going to forget or back out, uh no.

This morning I woke up having a nightmare that I was paralyzed and found the cat was sleeping between my legs and I couldn’t move. Oh yeah, my mind is not happy when I’m asleep. To the point of trolling facebook in the hope of catching the funny stuff. If it makes me laugh and distracts me I figure it will make other people laugh too.

Good thing I have warped friends.

There’s an old Woodie Guthrie folk song that keeps running through my head:

 

You gotta walk that lonesome valley,

You gotta walk it by yourself,

Nobody here can walk it for you,

You gotta walk it by yourself.

 

Some people say that John was a Baptist,

Some folks say he was a Jew,

But your holy scripture tells you

That he was a preacher too.

 

Daniel was a Bible hero,

Was a prophet brave and true,

In a den of hungry lions

Proved what faith can do for you.

 

There’s a road that leads to glory

Through a valley far away,

Nobody else can walk it for you,

They can only point the way.

 

Mamma and daddy loves you dearly,

Sister does and brother, too,

They may beg you to go with them,

But they cannot go for you.

 

I’m gonna walk that lonesome valley,

I’m gonna walk it by myself,

Don’t want to nobody to walk it for me,

I’m gonna walk it by myself.

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Cancer and my spiritual path

Someone commented somewhere else that they couldn’t understand what a cancer diagnosis had to do with spirituality. Something I became readily aware of that regardless of whether I survive or not, it has everything to do with my spirituality. All three of the Goddesses I’m ordained to are healing  goddesses of some sort because even a goddess associated with death is a healing goddess. I’m inclined to think that my relationship with Brighid, Hecate and Quan Yin is going to become a different relationship than it has been when my health problems were of the chronic sort and not the acute sort.

Depending on whose stats you look at Ovarian cancer has a really bad survival rate some put it as low as 24%. I hope to beat that 24% and raise it but one never knows what cards you are going to draw.  A lot depends on the stage and whether it has spread. It could be attached to my intestines or my bladder or both. Because I have some numbness in my right leg it could be doing nasty things to my spinal nerves and because I have plaques in my lower lung it could have gone travelling there which I guess is quite common according to my obgyn.

They have told me the hospital stay could be from 4-7 days next week. A seven day hospital stay does not sound like any fun to me. I haven’t had a stay that long since my eye operation as a kid and that really wasn’t any fun at all. At least now I can fight back if a nurse hurts me, when I was little I couldn’t even see it coming.

Tonight I’m going to light a 7 day Brighid candle, to start the process. If I’m not too sick next Monday night maybe I’ll post how it went. I might not depending on what the prognosis is and how well I’m processing that information.

I have to say it has made me more attentive to things. The first bird I heard yesterday was a crow, this morning some crazy mockingbird was singing in the rain. And we have our long awaited rain and it’s supposed to stay all week.

So I look up and out and treasure each moment. I treasure all the friends that have said encouraging things here and on Facebook. For some reason at the moment I’m not scared. I probably should be but not having the cancer out is not an option but it’s just a first step.

I wish Laura or Mary had talked more about what they were going through. I wish I knew what they had thought or faced. I know each journey is personal and I’m a pretty private person but maybe I can help someone else in this situation or not.

I did think it’s pretty funny that there are so many men that want to be women right now but will never know the truth about being a woman and owning the parts of a woman that can turn around and kill you. They’ll be women when they can get ovarian, uterine, cervical and have a higher rate of breast cancer, until then, they aren’t women.

As the stomach churns- all on high alert now

Yesterday I met with the obgyn because of what they said was on the MRI. Usually I get a copy of the reports but not this time. I wish they had because I might have been more prepared for the news. There will be no biopsy. They are going straight to surgery.

As I watched the obgyn read the reports which they had not bothered to forward to her and she got them while I sat there, she was getting more and more alarmed and she started to show them to me and underline things in the reports that should have sent up red flags before now. I like her a lot and it turns out that her obgyn is the obgyn/oncologist that did my hysterectomy in 1996.

I have a 13cm tumour, that’s big because 1cm = .39 inches. So over 5 inches. She said because it was solid that it was more likely to be cancer. She sent me straight downstairs for 3 blood tests that are for ovarian cancer markers. She also says she is going to shove through the referral to see an oncologist that she really likes. She recommended two that she liked operating with. She didn’t want to take something out without the oncologist since they would probably have go back in again if it was cancer. Both them are at Huntington Memorial and one is also with USC Medical School, all really good recommendations.

So now I see the oncologist and they will schedule surgery. Looks like my zipper will get another workout.

I’m having rapidly changing emotions but mostly I’m mad. For a year and a half I’ve gotten pats on the head and basically been told, take Imodium and maybe it will go away but I knew something was wrong and badly wrong. What if I was the kind of person that blindly did what doctors told me? I still would have a tumour and no clue about it. Ovarian cancer is really hard to diagnose but this is ridiculous. Every specialist seems only to be able to see their part of body. I would be royally screwed if I hadn’t kept pushing and saying something was wrong and it still may be too late. Women, if you know something is wrong, do not allow a doctor to ignore you, push until you know what is wrong.

As the Stomach Churns – more medical drama

I think I just heard the scariest words in the English language, at least to me, “You have a mass and we don’t know what it is. We’re scheduling you for a biopsy.” The doctor called about 24 hours after my MRI. The fact that she called me directly mid afternoon told me it wasn’t good news. Normally if she is going to call me it’s after hours. She said she was sending the referral to the OBGYN and they would schedule the biopsy.

But I still have no diagnosis. Just that it’s a mass with solid parts and parts that aren’t solid and may be cystic. And the still have no clue where my ovaries have wandered off to. They haven’t uploaded the report to the website yet, they called the doctor when they looked at it. That alone made my buzzers go off ding, ding, ding, Danger Will Robinson!

I shouldn’t look in my Merck Manual either because then I really scare the crap out of myself. Under abdominal tumours it has the lovely statement that tumours in post menopausal women are almost always cancerous. I did not need to read that. It’s because there is no estrogen fueling the tumour if your post menopausal.

I did have one funny thing happen. They got the iv in and were about to flush it with saline before putting in the gadnolinium and I felt this awful pain and looked up to see the two nurses with their eyebrows somewhere near their hairlines. My vein had thrown the needle clear out of my hand. They’d never had that happen before. Denise thinks Mary came and yanked it out. They wrapped my hand in ice packs and did manage to get it in my other hand with minimal bruising and none in the hand that had rejected the needle. That in itself is weird because I always bruise at least a little. They were using my hand because I’ve been stuck so much other places with the contrast in two CT scans and all the blood testing.

Not having a good day, sigh.

 

 

 

Fears

Tomorrow is another medical testing day. I get to have an MRI of my abdomen since they found an Intrabdominal pelvic mass after the last ultrasound and CT scan. I hate MRIs. This is number 11 on the lifetime scale. I wasn’t claustrophobic until about number 4 or 5 when they shoved me head first in instead of feet first and I so wanted to try the open MRI but they aren’t as effective as a closed one so this time I’m letting them sedate me before hand.

And this time, I’m scared. It could be nothing more than one of my ovaries that they haven’t been able to find or it could be ovarian or bladder cancer or some other fun growth that my body has decided to cultivate. As one of my doctors has told me multiple times, if your body grows things, it grows things. What he meant was if you have a body that likes to make things like skin tags or moles or fibroids, it’s prone to grow other things like polyps and cancer. The same triggers contribute to growing things as small as skin tags can contribute to growing big things like cancer. I have that kind of body.

So, I’m growing something they can’t yet identify. I feel like a science experiment since no one can figure out what is making me sick. We find some things but they aren’t a solution to the problem or it doesn’t keep working.

At the moment, I’m acutely aware of my mortality. Losing Mary was so hard and I don’t want to do anything more to my friends and family. I saw my little brother, Frosty and Laura fight their cancers and lose. That is a train I don’t want to catch.

I know I should try to stay in the moment and not let my mind go forward into dark places with bad endings since it may be nothing or something easily taken care of but my odds aren’t that great since my family’s cancer history is huge.

Anyway, I’m trying to be in the moment and not mentally go where I have no business going until I have an answer, even if it’s more testing like a biopsy.

I can only change this moment, not the future and certainly not the past.

Breathe…

We were 7 and 8
My sister and I
Lost in the woods
When lightening filled up the sky
As we ran through the ran
We knew where to head
To the light on the porch
“Come home!” like Mama said

Chorus

Follow the light
When you’re lonely and lost
When out on the ocean
You are tumbled and tossed
Follow your heart
Wherever you may be
Follow the light on home to me

Out on the sea
The waves heave and rise
Far from the shore
When a storm mounts the skies
We look for a sign
For some welcoming sight
A beacon from home
To guide us on this night

Chorus

Bridge

There’s a hole in our skyline
There’s a hole in our town
There’s a hole in our hearts
The whole world around
How do we heal?
How do we see
The mercy that shines in you and me?
(We follow the light…)

When the world feels so big
And we seem so small
And you wonder if life
Has any meaning left at all
When you’re losing your heart
When you’re losing the fight
Hold on to my hand
And we will follow the light

©2001 John McCutcheon/Appalsongs (ASCAP)

As the stomach churns or today’s installment of the medical drama

I had my ct scan and ultrasound on Saturday and now I have to wait 2 business days for the results, Such fun but at least they were after the Mercury Retrograde. The effects of that are still hanging around though since you have to have a blood test for kidney failure 48 hours after and they didn’t send the orders for it. So I wait…

We went to the Pasadena Humane Society after getting breakfast. Lots of kitties but none of them felt like the “Right”one so we came home empty handed. The rest of the weekend Ali’s kitty was all over me. I don’t know whether she is trying to say she wants to be an only kitty or if she is trying to comfort me but I miss having my own kitty.

)O(

Okay, got the results back. CT scan – I have “stable” nodules but I have to have another CT scan in 3 months. Ultrasound – They found a mass near or on my bladder so I am now scheduled to have an MRI to get a better look. I hate MRIs. This will be my 11^th. I was never claustrophobic until number 4 after that all bets are off.

More blood tests scheduled for tomorrow at 7 am. I feel like a pincushion but then I think of my friend, Mary whose veins are now like paper and I know it’s not that bad. I just hate it.

So the medical drama continues

As the Stomach churns – a TMI medical soap opera

The medical drama continues: As the stomach churns:

So far I have had an endoscopy, a colonoscopy, an ultrasound and a ct scan of the abdomen parasite testing, celiac testing, various blood testing and an ultrasound and they have all been “Within normal limits”. However, the ct scan showed nodules at the bottom of my lungs and 2 opacities on my bladder which could be cancer or my lost ovaries. Only I could have wandering ovaries.

But I did a bunch of research myself and found that excess bile can sometimes cause your system to go weewah, (my highly technical term for diarrhea lasting over a year) that problem isn’t supposed to continue very long after you have your gall bladder removed and it isn’t supposed to start 10 years after you have your gallbladder out but my doctor agreed to try the medication they use after gall bladder surgery for people whose gall bladders don’t get with the program after surgery, the stuff is a nasty powder that you have to mix with something.

The first batch I got, I had to take back because they sent me the stuff with aspartame because I’m diabetic but I’m a diabetic who is allergic to aspartame so they had to represcibe the one with sugar in it. I learned very quickly to mix it with orange juice and a lot of it. It recommends things like chicken noodle soup and only 2 ounces ( who makes 2 ounces of chicken soup?), it’s orange flavoured, so not going to make chicken orange soup. But wonder of wonders, it’s working. I can’t take it every day, I have to give my body a day off every 3 or 4 days or I have the opposite problem.

You have no idea how hard the last year has been. I couldn’t leave the house some days. I couldn’t take the bus for work. I couldn’t do a lot of events because I was afraid of having an “incident”. Going to my camp reunion and then going to the Spheres on Saturday was the first time I had ventured out in a year. I still live in fear that it will stop working but after all the testing coming up with nothing wrong with my digestive tract I had to figure something out because my poor doctor was stumped and he still has no clue why my body started to supersize bile production like it has. All I know is it did.

So now on the 26^th a Saturday, so I won’t miss work, I “get” to have another ultrasound of my bladder and a chest ct scan. It would be pretty weird to have lung cancer since I’ve had less than whole pack of cigarettes in my whole life because friends used to take them away from me if I lit up when I was going to dyke bars. They said it looked like a baby was smoking so it didn’t make me look as cool as my young self thought it would. I’m not sure I ever even got to smoke a whole cigarette before they would get taken away. But I did grow up in LA smog so who knows and I, allegedly had a case of Valley Fever one year at camp, so who knows again, I sure don’t. I’m hoping it’s my lost wandering ovaries that have found a home on my bladder and not anything else. I know they had to rebuild that whole area during my emergency hysterectomy because the fibroids were choking my bladder shut as well as my intestines and invading other areas. What was supposed to last less than an hour lasted four and a half hours to repair the damage so again, who knows what my innards have gotten up to.

Anyway, I guess future medical episodes are on the way

Just for you, Cim. 🙂

Today’s installment of “As the stomach churns” the TMI medical drama – Edited with update

I spent yesterday at Huntington Hospital’s Imaging center to get a ct scan of my intestines. So not fun. When I got there the very nice person at the reception desk handed me 3 450ml bottles marked with times 20 minutes apart of a barium solution. This is not a cocktail I can recommend. It was warm and thick and with the slight fruit flavour of a market that has let the melons go bad, It tasted like warm snot, in other words, totally gross. I got into the ct scanner where they went to hook up an IV of iodine dye. The vein on the right arm collapsed after they started. What I heard was “Uh oh, it’s blue.” Note to all nurses: never say “uh oh” during a procedure, luckily I had an idea what had happened and just said, “did the vein collapse?” because your mind starts screaming when it hears, “uh oh”.

She called the tech in and he put it in and that worked. I always tell them I have rolling veins and to use the pediatric set up and they never listen.

Then I got to spend 15 minutes sliding in and out of the machine being told breathe/don’t breathe. I’m glad it was feet first and not head first because after having 10 MRIs those damn tubes make me claustrophobic. Tomorrow I have to go have a blood test to see if I can start the Metformin again. You can’t take it and the dye or your kidneys could fail.

My doctor called with the results last night. The good news is there is nothing they can see that is causing the problem. My intestines and my pancreas are in good shape for someone my age, but they did find some other stuff. I have two cysts in my kidneys that he said were no big deal but they found spots on my lower lungs and two spots near my bladder.

What does all that mean? I get to have a full lung ct scan, oh joy! more barium cocktails and I may have to have an MRI of my nether regions to find out what the spots near the bladder are, but on a funny note those may be the ovaries they lost during my hysterectomy since I never had endometriosis which he thought it could be. When they did my emergency hysterectomy, I had fibroids wrapped around my bladder on the edge of gangrene. They had to take my intestines out and clean off the fibroids, They had to take my cervix and a lot of other stuff and my fibroids had swallowed my ovaries. He thinks they may have gone on a voyage when everything was removed and are now near my bladder since they had to resituate that when they cleaned it off.

All that means I may have a date with my nemesis the MRI machine and another trip to the ct scanner and or ultrasound. He is having another radiologist read the lung part again. But I had Valley fever back at camp in the 70s and it may be from that

Oy!

The kitten greeted me on the top of the stairs when I got home and was looking at me questioningly. I told her I’d been at the vets and she cuddled my side and purred. I was sick all afternoon and she slept on my chests in between bathroom visits.

Look a matching set of pretty colours

The visual portion of today’s soap opera

 

Update, My PCP just called and is ordering the CT scan of the chest and the MRI of my nether regions. After a year of having to wait for each test, all of a sudden things are moving awfully fast.

TMI – more fun medical drama

I get to have another kind of RotoRootering. I’m so excited…NOT! I have to have an enterographic ct scan which seems to involve being shot full of dye according to my doctor and then having my small intestines smile for the camera. I haven’t had a ct scan since I rolled my car three times in 1996 so he said the effects of that are gone. I didn’t know they hung around for so long but I guess they do. And since the brain and my intestines are fairly far apart we should be okay. Hopefully it’s feet first.

So I may not need a nightlight not that I ever use one, for that night. Now I just have to wait for the authorization and we schedule it.

I like to use the phrase “I get to” rather than I have to because my mind is about to melt from all these procedures and no answer. It’s a way to try to stay positive. The doctor called me an enigma since we’ve ruled everything out already and I still have symptoms. I spent most of yesterday running to the can instead of working. I keep telling my boss I need to set up a laptop in the disabled stall of the bathroom. What fun.

More medical drama – sigh…

I have to get a new PCP (primary care physician) because the old one I had just broken in was in a car accident and retired. She was younger than me. So I had a new appt with the one that is supposed to replace her. I need to find another one.

I don’t know if she was stupid or prejudiced for some reason or what but I filed a complaint. She asked me once if I drank and I said “no”. A little while later she asked me again. She was so busy asking questions she obviously wasn’t listening but she asked me again if I drank. Then I got mad. I think she may have asked again but by then I was so mad I couldn’t hear.

Then because I have worked in healthcare insurance for over 30 years and we now have access online to our patient record including any notes they make during the visit, I went online to look at my record and I find she has written I “deny” using alcohol. For the record I do not drink. I haven’t had more than a few swallows of anything alcoholic in over 40 years and when I did it was for cough medicine because I’m allergic to codeine. I haven’t drunk anything really since a day in college when a bunch of us upstanding ASB officers at my college were having a birthday celebration and someone dared me to chug a bunch of white wine. That was fine until about 4 hours later when I started vomiting massive amounts of blood. Kind of takes the fun out of it and I have been the designated driver ever since. As I have gotten older being around people who get drunk has become even less fun because I tolerate stupidity less and less and drunk people get stupid very quickly.

It probably doesn’t help that I was raised in a mostly Scottish family that was a teatotaling bunch of Presbyterians. The church was dry as a bone. My grandmother joined to Christian Temperance Union in 1895 at the age of 5 before they left Canada. And she never touched another drop and she was 86 when she died. My parents only had wine because everyone is allergic to codeine and Mom found that 2 sips of wine helped when you had a cough and couldn’t have cough medicine. This created a problem when my little sister had a bad cough and mom forced her to drink two swallows. My sister had a fit and several months later when Mom got a cough she found that the wine was so old it had turned to vinegar. My sister is 51 and hasn’t had a drop of wine since.

There seem to be two kinds of Scots that I know. Ones that drink and can drink a lot and those that refuse to touch it and even though I no longer am a Presbyterian I don’t think drinking is a fun and harmless activity and I like not pickling my brain.

The fact that she used the word “deny” to me implies she did not believe me. I was a Worker’s Comp Hearing Rep for many years and when the word “deny” is used in court or a deposition it means there is doubt about what the person says and it can’t be verified. Since my A1C test was normal, I would think that would be evidence that I do not drink. Alcohol is a sugar and diabetics really shouldn’t drink. If I had been drinking my A1C would have been elevated and it was lower. (A1C tests what your sugar levels have averaged over 3 months.)

I got voicemails from 2 different people last night from my IPA (physicians group) wanting to talk about my complaint. This should be interesting.

)O(

Just got a call from the Lead Physician, weird title that. He wanted to hear my side of the story and he agreed that asking 3 times if I drank was a bit out of line, so we’ll see what happens but I still think I need a different PCP