Tag Archive | cancer

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.

Cancer is scary as hell or grounding is hard

Do you think they let you load your hospital gown with hematite before surgery? Having trouble sleeping and grounding. I don’t think sleeping will be a problem once the anesthesia kicks in although I have come roaring awake and almost off the table during procedures when something has been done that wasn’t discussed first. I had the hand prints from the nurses trying to make me lie back down the first time.

Now I warn doctors to talk to me even if they think I’m out like a light and my gastro said I’m really hard to anesthetize. Guess that red headed thing is true. Redheads allegedly need more anesthetic and more painkiller than non redheads. Last time I was at the dentist we got up to 13 shots of novocaine for a tooth cleaning. My nerves aren’t where they belong either.

On the other hand, I’m perfectly capable of an out of body experience and have done that too when I got really sick once at camp and had 105 fever and an infection after minor surgery. I remember sitting in the corner of the ceiling watching everyone run around my unconscious body and thinking, I so do not care. They even dropped me on the way to the car and I just couldn’t be bothered to go back and when I got there I woke up slightly and they gave me a shot of fenergan and the nurse remarked she had never had someone not complain about the pain of the shot. The next morning when I was brought back and they remembered to take my blood pressure it was 80/60.

So I need to stay grounded in my body no matter what and not become a little pink cloud and decide I need to float off somewhere because I see something pretty in the distance.

Grounding can be hard. When I’m grounded I sleep easily almost the moment I lay down, when I’m not grounded I don’t sleep or I have disturbed sleep. I haven’t had a good night sleep in a while. The monsters under the bed called “What if” come out and run around at 3:00 am. Somehow my sister’s cat knows this and sometimes she comes down the hall and drapes herself over me and purrs. It’s pretty good at scaring the “what ifs” away. After over 30 years in the Craft I know just about every grounding meditation known to humankind and have made up a few of my own but sometimes you can become immune to it for lack of a better term and the monsters are overwhelming. I did discover the Underground Apps on Kindle and they have some pretty cool nature jigsaw puzzles and if you crank the piece number up you can really keep one going and it becomes mindless. Colouring only works if I turn on the light and that would disturb my sister.

When I’m awake during the day, I’m pretty calm and pretty much accepting of what is coming but at night all bets are off. I worry about them having to resect my bowels like they say they might. I worry that the reason my leg is getting numb is that it’s pressing on spinal nerves. I worry about catheters and their propensity to be high ways for germs. I worry if I’m scaring people or disappointing them in some way. I worry about my sister and the fact that if something happens to me, she is the last one in the family and will be alone. I worry about all kinds of stupid shit. When I was little I worried about everything to the point of tearing out all the hair on both sides of my head a hair at a time before my eye surgery because in those days you didn’t talk to kids about hospitals and I overheard them talking and just snatched myself bald including eyelashes and eyebrows by the time they told me and they figured out why my hair was disappearing.

I grew out of it after I moved out of my parent’s house pretty much. It does come back from time to time like when I was off work but at the moment the screaming mimis are running around at night and they haven’t got a nanny. I visualize them as the bad Minions sometimes. I love the Minions but not these guys.

I’m probably blowing everything out of proportion but cancer is scary no matter how you slice it. It’s just scary as hell.

 

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.

Two weeks is too far and too close

Two weeks from today the cancer comes out. I’m hoping that it goes well and it’s all encapsulated. I know with my symptoms that may be in vain but still I hold out hope.

Stlll trying to figure how I get to the hospital and then how I get home. I may take the bus since it’s not like I’m taking a long trip. Just taking a small bag and most of it will be things to do since they have said it’s a 4 to 7 day stay depending on what they have to do to remove it. This is where I’ll be going: https://www.methodisthospital.org/services/oncology/Pages/Oncology.aspx. It cracks me up that they have a beauty parlour.

I did more research on my doctor since I have an HMO I don’t get much say on who I have treating me but it turns out he is the guy in Southern California you go to for ovarian cancer. That makes me feel a lot better that he is going to find it all if he can.

I know that having the surgery is going to make me feel worse for awhile before it feels better especially if I have to go through chemo and/or radiation. I remember what my brother was like going through it and it wasn’t good. I hope the treatments effects have gotten better not worse than what he went through for brain cancer. And I admit that the only thing I’m at all vain about is my hair and I really, really, really don’t want to be bald. I’ll look hideous. I will not have a beautiful smooth bald head. I have a giant lipoma on my head and my skull has square corners not a nice rounded shape. At least when Cam went bald his head was pretty. I also hate wearing hats for longer than an hour or two at a time. I hate anything that blocks my crown chakra or third eye. It can make me a bit buggy. Not to mention that I have a huge head. This was my head as a baby,

mb1 004.jpg 1

The size of my cranium and that of most of my family seems to be a Scottish thing. When my sister and I went to see “So I married and axe murderer” we got a lot of funny looks in the theater because we got absolutely hysterical over the Scottish father complaining about his kid’s huuuuge head. I definitely do not have the Swedish side’s beautiful round heads. I’m a block head and any hat I have now will probably not fit until my hair grows back anyway. I really don’t want to wear one of those scarves that scream “CHEMO PATIENT”.  When I was at camp I used to be able to wear either a Dutch Bargeman’s hat or a newsboy cap and sometimes a baseball hat just to keep from getting my head sunburned. Nothing sucks more than burning your part and the tops of your ears. It’s just gross to peel your head like a zipper.

All the chemo headwear online is awfully foofy and way too femmy for me. I suppose I could just use a bandana and try to look like a tough dyke but that would just reduce most of my friends to tears of laughter I’m afraid.

Hopefully, I don’t have to do a number on some idiot like the one I did on a woman in a restaurant one time when I had just driven Cam from chemo.  Cam’s hair had fallen out and he had a target for radiation painted in purple across his head so he had to wear a cap. I had taken him to Coco’s to see if I could temp him to eat anything.  He got up to be sick in the bathroom and this woman in the booth next to us started to try and shame him to take his hat off by making several loud comments about men who wore their hats indoors. When he was gone I went over to her and reamed her a new one about it and that he had cancer and was having chemo and had to wear the hat and watched she and her companion try to sink under the table while I quite explicitly told her what I thought of her petty meaness. They got up and scuttled out soon after that but I bet she never did that again to anyone. I have a feeling I did my big scary glamour on her and I’m not sorry a bit because she brought it on herself. Shaming people because you believe they are wrong is just nasty and someone that tries that with me will get me in their face. Poor Cam just wanted to disappear he was so humiliated by her. I’m afraid I do not have that temperament and would come out swinging my battle axe and I will not be among the wounded.

But that hasn’t happened yet.

I found this one: http://smile.amazon.com/LOCOMO-Tentacle-Octopus-Cthulhu-FFH135GRY/dp/B00JBHLOXA/ref=sr_1_7?s=apparel&ie=UTF8&qid=1451343694&sr=1-7&nodeID=2474954011&keywords=hats

Or this one http://smile.amazon.com/Vbiger-Womens-Wool-Fedora-Newboys/dp/B014KNFKBG/ref=sr_1_9?s=apparel&ie=UTF8&qid=1451343805&sr=1-9&nodeID=2475002011&keywords=hats

This one?: http://smile.amazon.com/Black-Blended-Wool-Derby-Hat/dp/B005KJJA5W/ref=sr_1_26?s=apparel&ie=UTF8&qid=1451343805&sr=1-26&nodeID=2475002011&keywords=hats

But this is an old favourite: http://smile.amazon.com/Sterkowski-Cotton-Corduroy-Breton-Fiddler/dp/B016D6HUJS/ref=sr_1_5?ie=UTF8&qid=1451344086&sr=8-5&keywords=Breton+corduroy+caps

 

 

 

 

 

Grieving the loss of something I love

FB_IMG_1450220869206

I’ve led the Yule caroling every year for over 10 years for our public ritual. The last few years have been hard because I can no longer tune my guitar as accurately as I want to and I’m sorry but I find electronic tuners annoying and not quite as accurate as the human year.

Now it appears last year was the last time I might have been able to lead the carols. If I had known it was going to be the last time I would have cherished it even more last year.

There is something very sacred in people singing together and if it’s very old songs that have been loved for hundreds of years it’s even more special even if as pagans we sing our own words.

FB_IMG_1450220804971

As a child, going to Christmas eve service and singing in the dark with other people whose hearts were wide open was the magic I always wanted to know but magic and the sacred isn’t only on what night a year. As a pagan I have found that magic in many ways but I still cherish the energy and open hearts that people have at this time of year and that I have always remember.

FB_IMG_1450220705052

Light follows dark

Anyway, I’m grieving the ability to do something I love. Damn body is just not making life easy for me. I was sick all weekend and I’m sick of the whole thing and I’m hoping that surgery cures the problem and that chemo and radiation are not hiding around the corner but if it is, I’ll do it. This is the season for hope, sometimes hope is just a small flame in the dark. May the sun come again and bring her light to return on Solstice and maybe, bring a little healing along with the light. I have too much left to do, stories to write, pictures to draw, people to sing with, people to love.

So this Yule the best gift is to tell people I love them

The road goes ever on and on

I saw the oncologist Wednesday and I was very impressed and that is saying a lot. I’ve worked in Healthcare Insurance for 20 years and before that did 10 years of Worker’s Comp. Doctors no longer impress me just by being a doctor. A lot of them are cretins and idiots and only out for money.

Anyway, I liked him a lot and since he will be doing my surgery, that’s a good thing. He listened and then told me a ton of information that his staff also went over at the end and he actually did an exam. I can’t tell you how many doctors never touched me once and just typed notes in their computer and never really even looked me in the eye.

After they get authorization I will have surgery in January and I had to give consent for several procedures including tumour removal, omentum removal, exporatory surgery and maybe a bowel resection and a few others like oophrectomy. (I love the way that word sounds even if I’m not going to love the procedure.) This is so not going to be fun.

I called my work insurance to find out how much the copays were for chemo and radiation and found out there was no copay for either. It’s covered. I’m so glad I finally got a job and have insurance through work. So far I haven’t had to pay anything but Dr’s office copays. I will have to pay 15% of the hospital bill after it’s been reduced to the amount contracted with my insurance but I have an out of pocket max of $3 k and since it’s in January I can use my HSA and I just signed up for AFLAC although it may be too soon for them to pay.

I’m having moments where I’m terrified out of my bird and others where I just know it has to be done and I want it over and done with so I know what the hell my body has been up to.

I’ve been researching credible sources on cancer and not the fly by night ones and even those can terrify you if you look at the survival odds for ovarian cancers. Who know those little buggers I’ve never had any use for could get up to so much trouble?

I do have one plea to any woman out there that hasn’t been checked in a while. Go to your doctor and if you don’t have insurance go to your free clinic or Planned Parenthood or here in LA at the Gay and Lesbian Center they have a free lesbian health clinic so you have no excuse for not getting checked and ending up like me. There are free mammogram services you can access too. Women who have never had children and never needed birth control are ironically more likely to get female cancers than straight women or women who have had children. That is just unfair but true.
So, I have surgery in January and hopefully the surgery doesn’t have to be extensive as they are saying it might be.

Rough day today

I wasn’t going to go to our Faire on Saturday because I just can’t drive that far and not get sick sometimes but my friend Nancy offered to drive so we went. I only managed to make it to just afternoon when I started to feel sick but I collected a lot of much needed hugs. I should get the pictures uploaded soon I hope. Maybe tomorrow if I manage to get internet access somewhere. But I did have an absolutely wonderful time and thanks to Nancy for taking me.

Tomorrow I see the oncologist and I find out how and when this thing is going to go. They already registered my at one hospital but I’d rather be at Huntington where most of my drs are and I worked there for a short time when I was temping. We’ll see.

I’ve been feeling crappy all week and I paid for my Faire jaunt. I slept most of Sunday when I wasn’t in the bathroom. I cheated and took Imodium so I could go to Faire but when it wears off there is hell to pay.

Today I just feel like Jabba the Hutt. At least now I know where the belly has been coming from. I’ve been walking a lot over the last few months. If I take the bus around 45 minutes total for the day because I also walk to Starbucks at lunch and my stomach has been getting bigger not smaller. I guess something the size of a huge grapefruit can shove everything north. Maybe after surgery I won’t look like Santa’s clone.
Sepultura nominated me for the three day quote challenge again but it’s going to have to wait til I calm down after the doctor tomorrow

I haven’t been scared up to now. I’ve been very calm but today? Not so much, kind of crawling out of my skin and I haven’t slept well in days. Want to go make mimis, NOW!

The journey so far

So until this is over and I’m well again, I’m going to be blogging a lot about my cancer journey, so you can skip over these posts as they may not always be funny but writing is my way of processing information.

I’m strangely calm about the diagnosis most of the time. Other than having had a case of the runs for a year and a half most of the time I don’t feel that sick. I have found that some of the symptoms I assumed were from other things weren’t , things like back pain and weight gain around my tummy. Evidently unlike most cancers, ovarian cancer can have weight gain and make your pants feel really tight around the middle which I guess makes sense if you are concealing a tumour that is bigger than a grapefruit. I’ve been losing inches in my legs and butt and boobs but my pants were getting tighter not smaller.

I hadn’t bought many new clothes since I got this job 2 and a half years ago but with impending abdominal surgery. I got three pairs of really soft pants in the men’s dept at Target. They seem to be a really light fleece. I also ordered some soft fleece lined leggings from Amazon. I learned with my hysterectomy and gall bladder soft pants are wonderful ‘cause putting on your jeans just ain’t an option.

I’m feeling very loved. That helps too. Lots of people have sent prayers and wishes. It makes me feel not so alone on my journey. Next Wednesday I see the oncologist and probably schedule the surgery. They registered me at one hospital already but I’d rather be another that would be more accessible. My sister would have no way to get to Arcadia but she can take the Gold Line to Huntington and I know a lot of people at Huntington. We’ll see.

Meanwhile I’m taking one day at a time and trying to enjoy it.

As the stomach churns – Yep it’s cancer

Okay, got the lab back and I had a positive result for ovarian cancer markers. My Obgyn sent the records and scans to the oncologist yesterday and when he has reviewed them, his office will call me to schedule a visit and then the procedure. I’m hoping it’s at Huntington because I know so many people there but he also works out of Arcadia Methodist.

I don’t like the idea of being in a Christian based hospital.

Anyway, now I get to wait to see another dr and I’m hoping it’s a very short wait.

This is going to be a fun holiday season, NOT!

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.