Hey... I'm alive. And BALD....

I have had 2 surgeries since the last entry. One to remove the ovaries and tubes and almost 2 dozen of my lymph nodes in abdomen pelvis and in my R thigh. The surgery was rough... damaged some nerve bundles... so I've got my whole right thigh feeling buzzy, tingly and in pain... Neuropathy.

They say it SHOULD be temporary. But I know enough about life, and disability (my jobs dealt with disability insurance through SSA and their benefits for over 6 years).

I hope they're right.

That surgery was early in January 2018. I had the next in February to install my port in my chest... right side, of course... which is hard for me, since that's my strong side. My left side is weak. I can't lift much with my left arm... left side had nerve damage as a child, due to a fall.... long ago

Anyway... I'm more than half way through chemo therapy. I'm bald and at times doodle on my head for kicks. Why not? I already had issues with my hair dropping and thinning due to a disease called alopecia. Stress related and genetic... So to me it didn't surprise me to lose enough to need to shave my head within less than 3 weeks... I get my treatments every three weeks.

I get the next one next week, on Thursday. They take up 5+ hours of my day from start of the visit to end of actual therapy.

I'll have a month break between that and radiation, for testing and more surgery... lymph nodes again... MRI's CT scans and PET scans can't see my particular cancer... I don't light up.

Mine masks itself as healthy tissue... until cut into you wouldn't think it was cancer...

My case is a challenge. All my doctors have been stumped... especially since I'm seeming as healthy as I am.

I've had some ugly and scary things to deal with... no need to share all of that.

I'm alive. I'm here now once in a blue or green moon.

Wishing the best.

here's a video of a recent release from one of my favorite local bands...

surgery was over 2 weeks ago, now...

lots has happened since then.
The surgery went well, to my daughter and boyfriend... To me, after being told in graphic detail... not so much.

But, then, I've worked on cases for Social Security benefits, and helped people with their billing issues, back when I worked at the call center... My view is different. My doctor was appalled that she had to cut my uterus to pieces... it was still only a vaginal surgery, but it was much more dangerous and challenging. The right side had hardened, stiff and inflexible. There were also pieces of the mass that were much like it. It took just under 4 hours, instead of the standard 1.5 with a max allowed of 2 hours.
I lost a lot of blood and had veins collapse. My left arm looked like I'd been in an accident and had broken bones that had twisted in my forearm. And my poor anesthesiologist was traumatized even the morning after, when he came into my room in the early morning apologetically explaining that he'd had to use my jugular, for a blood sample, to check to make sure I wasn't in a critical state.

I was on oxygen, when I first awoke, and until just an hour or so prior to leaving on Tuesday. Both arms and hands were badly bruised. But, I'd gotten rid of the offending organ. My uterus was successfully removed and I was stitched up. My doctor had explained about the uniqueness of the state of the uterus, and how impossible it'd been, to do a normal removal. They normally contract and can be pulled out like a balloon. Mine couldn't. Which is why it had to be cut into pieces and extracted. She also explained that they'd sent the tissues from the uterus to the lab for biopsy. I agreed and thanked her.

My sister-in-law was able to stay the whole time, with my daughter. Her husband stayed with them, too. They kept my kid distracted and feeling safer than being at home waiting to hear, would have felt. My boyfriend had had to work a full day, so that's why my sweet sister... for that's who she IS, to me... MY sister... not just the sister of my ex...
Anyway, she's helping me financially. She's wanting to do all she can. I'm grateful for her care, love and ability to help this way.

Two days after returning home... I got a call from my doctor late in the evening. She explained that she needed to give me the results of the biopsy. She asked if I had time. I did... I have cancer. Hopefully, HAD it and it's been removed fully and successfully. God, I hope so. She let me know that she'd been crying and wracking her brain, since this hadn't been found in any ultra sounds from the last 2 + years, or in my biopsy in July. It had been close to the skin interior of the uterus, not within the mass, and endometrial lining, but flush with the walls. It was in the muscles. SO had metastasized at least once already. This is a slow growing cancer. Not something you find in someone as young as me... more like in an older woman in 70's, 80's or 90's. This woman is known through the state for her work. She's phenomenal. Anyway, this was hard news to give me... cancer. More surgery, and likely chemo, or radiation as well.

Monday this week, I had a CT scan, also known as a CAT scan... with contrast... I hate Barium... blechh... just sayin'. And on Tuesday, I had a follow up with my awesome gynecologist in her office. Good news. nothing glowed in the dark. Not going to guarantee that I'm out of the woods yet... You see, I'm also dealing with a fungal infection in my lung, and I was diagnosed with fatty liver disease. Well, verified that I've got it.

This means, I cannot get the hormone treatments to help me gently go into menopause as planned. I'll be hit with it like a brick wall. All I can use is an old blood pressure medication, or lexapro, or xanax, to help with the hot flashes... and maybe with the crazy moods and freakouts, while we're at it...

I also will have issues with some of the forms of chemo and unsure about radiation... I'm screwed in a not nice way.

BUT... I'm alive. I'm still healing and now getting to the ugly nasty part of that... The goo that's leaking is nasty. Oy. Ugly, ick.

Yet, I'm alive... When we were talking about the wonderful news of nothing glowing inside me... we pointed out how much this had already improved my life... instead of months for those huge, ghastly bruises to heal, they were already all GONE by the two week mark from the day I walked out of the hospital... as in literally, I walked out... no wheel chair, nothin'. We talked about the liver. She told me coffee, and losing weight, reducing sugar, salt, and working out eventually, to burn off fat, would help substantially. I got told to drink my coffee? Seriously? Hooray!!! I'd been going without, because it thins blood...
Anyway, before the visit was done, we also talked about the possible need to see a gastroenterologist regularly. I told her I knew who I'd want to see, and about how amazing he was with my colon and esophogeal screenings earlier this year. She was thrilled that he's one of my specialists already. I then reminded her that with my anemia and past health history, I'd had to get cleared for surgery, with that set of screenings. I let her know that I'd typically had 1-3 bleeding ulcers, most of my life, since being put on INH (chemo) for testing positive for TB as a kid. I let her know I was aware that had they still been there, as with the previous screening, I could not have had the surgery. We wouldn't have KNOWN of the cancer... and I'd have struggled as long as I could with it destroying my uterus, until it'd spread further, likely, far too late to survive.

I thanked her for her help. I thanked her for her kindness. Oh what a hug she gave me...

I'm still not getting any income from the insurance company. But my sister in law is helping with what the church won't help with. And, maybe I can actually sell some of my jewelry and sculptures. I'm not sure if that's possible, but it'd be nice...

I still have COBRA insurance to pay for... and like ALL policies... the deductibles and MOOP's (Maximum Out of Pocket costs) are higher than ever... and costs of visits will go up, too. But, the premiums are going DOWN, for me... I'm not sure how long my sister can afford to help me... I know the next surgery, includes removal of the ovaries and Fallopian tubes and biopsies of lymphatic glans. They need to check for cancer in them... standard policy. I still have premiums for the long term coverage since apparently I'll qualify as long as it takes for me to heal and be strong enough to do daily tasks at home and at a job.

Right now... driving a car HURTS like hell... my abdomen feels torn to shreds. Walking too fast, or too long isn't long, and hurts like hell... lifting anything more than I'd say 5 lbs.. yep, you guessed it... I pay dearly.

I'll be in even worse shape after the next surgery. This next time I'll have a small cesarean type procedure... cut my belly open and take them out safely. Avoiding the tearing tugging pulling and cutting things to bits. And the biopsies apparently hurt like hell, too. Sigh... this is gonna be FUnnnn.

I'm alive. I'm so amazed that it may have all been removed relatively safely GONE... I'm lucky that my ulcers were GONE for the first time in decades. I'm lucky that I was able to have the surgery.. and found the cancer that was lurking and slowly growing. I'm blessed, to have had specialists who're the best in their field. My gyn and gastro are both up there on the lists...

And, I've got the loving support of people far and near. I hope I don't need chemo, or radiation... but I'd be one of the very rare few. I'll go through whatever it takes... I want to live a few decades longer. I'm praying no cancer is in my lymph glans.... oh how I hope and pray.

surgery on Monday, November 13th...
I'll be stuck in the hospital due to my critical anemia, so that I don't bleed to death the night after surgery.

Good news... I've been reviewing how much I've had as my share of costs for this year... My MOOP (Maximum Out of Pocket) will be under $950 at the time of surgery. Which means.... I may be able to afford it, cash up front.

Only because.. one dear sister-in-law and her hubby want to help me with this... and not enough people have contributed to the fund. Anyway, I'm grateful for my ex's sister... she's more MY sister in that we're friends who love each other like real sisters, even though we're no longer sister-in-law... we're still related by love and by the fact that we're aunts to each other's offspring.
Anyway... I'm so hoping I survive with NO complications after the surgery.

From there... I just have to heal and do my best to get my doctors to cooperate with my Short and Long Term disability reps so that I can survive this financially, too.

With no job to return to... Well.... I am not going to worry over that, until I'm close to time to apply for positions where ever I can find decent pay.

For now, there's no way I could work. And I"m not going to worry about that since I can't afford to WORRY.

Lately, I'm not capable of sexual intimacy as my boyfriend calls it.

He can't go down on me, and we don't have the full fledged SEX either...

It tends to trigger my bleeding

So I get nothing really.

I've given him a hand job in the shower... apparently I'm the first. Sigh, poor man. I've been the first to try this and that at least a half a dozen times now... and I wonder, am I THAT unique?


Anyway, lately, we've been stepping up the relationship. Regardless of lack of fulfilling sex.


I took him in hand, and swirled my tongue around his cock... making him wonderfully hard... I love precum so much... Mmmmm

Anyway, stroking balls and cock with hands, and swirling tongue, and pressing my throat around him making it feel like an orgasmic tremor is delightful. I love how it makes him moan and make comments. He's enjoying sex, it seems...

I'm glad...
anyway, I was giving him a deep throat, when I changed my position and ended up inhaling.. BAD move... but couldn't help it.... next thing I know he's cumming hard, and it shot right out my nose, with a squeaky snorted sneeze...

yes, really.

I sneezed his CUM all over him. Poor man


Thankfully he started laughing and couldn't stop for a while....

He has been chuckling and snorting out laughter randomly at work, thinking of me going down on him and then sneezing his gooey cum all over him...

It's going to be one of our inside jokes for the rest of our relationship. Thats for sure...

Blushing red and brightly... Oh yeah,

I'm glad we can laugh over awkward moments.

And that he finds it endearing, not at all frustrating or offending...

I'm glad I've got someone who rolls with it.. instead of a screaming raging angry soul like my ex...

Cumming out my nose was weirdly kinky... I mean.. I smelled his cum for a couple days, because of that.

Okay, so I'm weird... and I'm a very sexually pent up woman for too long in the past, and I'll be that way for a long while after the removal of my uterus, too....

So, I guess giving head, and simply snuggling are about all I've got to look forward to for about two more months...

Not quite sure what to say...

except thank you to those who pop in to hope for positive posts.

I'm still alive.

I'm still on short term disability.

I still support my lovely special daughter whom I love more than anyone else in this world.

I'm still able to crack jokes even when facing scary things in my REAL life...

So I guess I said something, eh?

I miss my friends here... TWL, Whisper, Whokens, TJ, and well... so many more...

Take care... and let me know how you're doing.

I'll continue muddling through life as long as I've got breath and blood in my body....

Have a lovely autumn day

by the kindness, generosity and love of my boyfriend's family.

Last weekend his family was talking around the dinner table with him.

His little brother donates blood at the Red Cross and a local organization regularly. His mother and youngest brother wanted to know what blood type I've got and how soon my surgery will be. They wanted to get the family together to start the process of donating blood for me at for the hospital where I'll have the procedure done, so that I won't have to pay for blood and will be set with enough in case I'm in danger on the table as is the concern of my PCP, hematologist and gynecologist.

See why I'm overwhelmed?

No one has ever asked or offered such a simple yet truly crucial and helpful gift to me.

I'm at risk of bleeding to death from things like falls, internal bleeding, etc. because.. well, I've got a bruise that is still active from when a vein collapsed during the second infusion I had back in June. I've had three series of infusions now, including this one from last week and this one.
Beginning of June. And I've got a bruise larger than a fifty cent piece that is still there in brown and yellow on my arm.

It took me 3 months to have my oral surgery heal up instead of the normal 2 weeks. THIS is my reality. THIS is what we're fighting to control. This is what has damaged my mind and body so severely over the past few years

Anyway. My boyfriend/Fiance, and his family are eager to know what blood type I've got, and when I will need them to start donating for me.

No one has ever offered such a precious life saving gift.

I am in awe of the gentle kindnesses of these people and of the love they have for those who're FAMILY to them.

Something about them for the guys...

Hmmmm.... well, as I experience more of oral given to me... I think I know.

The way lips teeth and tongue feel swirling licking over my clit and all that fleshy sensitive area down there... makes me cream and gush

This weekend my man stayed here with me for a couple of nights. We needed the intimacy and the chance to just enjoy being together.

With my current condition making me have Aunty Flo as a nearly permanent resident, leaves me very few open windows for oral for me and my bits.

But we were able to have sex the first night. He was careful. So concerned for my safety and pain. He had me at a different angle than we've ever tried, and it felt good to feel him inside of me, gently and hungrily penetrating and cumming due to the almost constant orgasms I had.

He's brought back orgasms in a rich way for me... I've been without true and strong ones for over a decade, except for when playing with myself...

Anyway... we were able, though the next morning apparently I have him rug burn when I climbed on top of him to ride him mercilessly. He's still a bit raw apparently from our conversation last night.

On our last day together I made sure he'd washed well... taste testing him while we shared a shower.

We didn't do anything until I licked and started to suck and lathe him with my tongue. I covered his cock with jojoba oil making him slick and making it easier for my lips to slide over and around him.

Tasting precum as it leaked was wonderful.... and making him cum so I could drain him dry like I craved was making me cream a bit as well....

I've loved watching a man's face as I stroke with my tongue and lick an tease his hard cock. Swallowing and pulsing my tongue against it... milking him dry...

for some reason men seem overly excited when they learn of my interest in doing that as part of sexual routine. Most forget that my needs are important too.... forgoing my pleasure, thinking that me giving them a bob is all I want.
I need it too... and I need the intimacy of sex and touch, and caresses and connection too.

A blow job is just the icing on the cake.... there's so much that is deliciously erotic.

I got to see my boyfriend for the first time in about a month.

I've missed him.

We went out, along with my daughter, to eat dinner. He bought us Rum, (Yummm) so that my daughter could relax a bit.

She doesn't drink very often, because she doesn't want to abuse it. But, with no medical insurance, and no job or money for doctors she's been running out of meds and is now utterly without her nerve blockers, for the first hard hitting episodes of Fibro that she's had since her teen years.

She will soon run out of her insomnia medication as well as her anxiety and panic attack ones.
I don't know how to deal with this. So frustrated about her not caring about herself as if to reflect what she THINKS I'd been doing with my own health. Neglecting self, refusing care, not pushing through with applying for Medicaid, or SSI from Social Security's plans for disabled people with not enough work credits for the main plan.


Me, well... tonight was refreshing.
I needed his arms around me so much the past few months. I've been home for most of the past nearly 3 months. Feeling trapped, worn out, and unable to sleep through the night. I rest during the days lately, to get some sleep.

Insomnia for me has been real for about 2 decades. Worsening with the progression of my anemia.

I'm waiting and praying for approval of Short Term Disability.. giggling, because they call it STD at work.

I will need it, since my Primary doctor has requested leave through December 1st at this point to keep me from over doing it, while they're desperately trying to find the reason behind my ever increasing danger.

I'm needing a hysterectomy of the uterus. They'd like to save the ovaries so that my hormones are still being regulated.
In order to do that I've got to have the assurance that my bleeding has been stopped for long enough to NOT cause me to bleed to death on the surgery gurney. This will stop my monthly cycle from lasting months instead of a few short days. It will stop the risks that it presents.
It will NOT remove the risks of me bleeding elsewhere... like nose, instantaneous bruises that spread across my body both huge ones exploding under my skin like colorful fireworks, capillaries that burst upon rising to the surface of my skin... and gums and other areas of soft tissue that end up bleeding chronically.


I want to live and be able to work again. I want to NOT be a burden on other people. I do not want to have to go through my own employer to pursue SSDI income for my own self.

I am tired chronically.

But I'm going to start creating again. I HAVE to. I need to make up for lack of alimony and income.

Good news is IF I get Short Term:

I'll have 60% of my income coming in for months to years.

I'll only have to make up for hundreds instead of multiple thousands per month.

My company and the insurance program with pick up the bill for my benefits.

My boyfriend will help where he can.

Lovely news for him... He's been offered a new job. One less taxing on his time, drive to and from, and with better benefits. Just the savings in Medical insurance alone will increase his income greatly. He is a dear man. I'm learning just how much I mean to him. It's amazing to me, really.

I've never truly felt valued or cherished by the men I was with. But I'm feeling some of that in this relationship. That is so amazingly refreshing and empowering to me.

That right there and my daughter and his children are enough to provide me with more purpose for living. More desire to focus on healing and working towards a better brighter future than the days are now.

I can say no cancer in my cervix or uterus

I'm NOT in perimenopause or menopausal at any level so it seems.
Blood pools down there as if... well, it's freaking me out actually.

And then, it doesn't.
My body's been trying to get rid of all blood in me for over a decade... so my uterus got rebellious and decided to keep an unhealthy amount of that inside of it. I've lost a few pounds s it sloughed some of it out. God knows I want the rest of it gone, and I don't care to keep the uterus any more....
Sigh
more of those nose bleeds... any of you remember me describing THEM? Fortunately not 2, 4 or 10 hours of high pressure fountain. Just a trickle every couple days.
Still have a bruise where my vein collapsed with my second ever infusion. It's almost like my body is trying to remind me how close I am.

Today, I had an appointment with my PCP. She's been better about my issues the last three times. She admitted that this is way over her head and that between herself and others they've tried every avenue most doctors would look for. I'm healthy, is what almost everything says... except 3cm of endometrial lining... and iron level below 5, with hemoglobin at a 10 AFTER infusions. It was as low as a 5 before. I'm overwhelmed.

But a Hematologist has been referred for me today. I've been putting back into place further support and protection for my income and job.
And I've requested information on Short Term Disability Insurance and the need to pursue it since there's NO way my providers can in good conscience assure my safety and ability to function on the job. My PCP, my daughter, and boyfriend all agree on that one. They want me HOME. And to NOT push myself to do the menial chores I can no longer do. To rest, and get the help of the blood specialist that my doctor's office has requested to assist me.

I'm tired. Yet, I rebel.
Those of you who're friends on FB may have seen the photos I took while on a drive "Home", up one of the closest canyons to my home. I got out and walked carefully slowly not even close to the water's edge. to imagine doing this with my cameras and laying on my belly, to capture my joy close to the water, or in it.
I miss it
I still ache for it and need it.
Such is life.
I need to settle myself and calm my worries. I'm not sure how I'd afford it. This was my last month of alimony. I'll have no more to use for wiggle room in my budget.

My daughter informed me that it seems I'll HAVE to start creating again, and sell some tiny sculptures of dragons, mer-babies, and other tiny magical souls. I'll be xxxxxx to create more jewelry as well... Hmmm, not sure that's bad news in that thought there. Sweet and dear daughter of mine. She's got a point. I'd prayed for the way to get myself back into creating.
Didn't want THIS kind of desperation to be the reason for it though.
Guess I haven't learned from all the lessons of my past about being careful about how I phrase my prayers. I get literally what I've asked for.