*Crickets*

Normally after his lumbar and marrow test, we hear back from the doctor within a day or two. That was Tuesday, today is Sunday …. no word yet.

The last time I remember not having any word was when the Leukemia had relapsed.

I am trying not to dwell on that, I am trying to think only positive thoughts and that the doctor is simply coordinating with the other hospital in Toronto for the stem cell transplant before he calls us back.

No point in making two calls when you only need to make one, right? He is a very busy man after all with the staff shortages etc. He had mentioned if we wanted to go ahead to call him back and he would let TO know on Friday and video conference with them likely Tuesday.

That’s the reason we haven’t heard, right?

*sigh* It damn well better be!

Kink too has been frustrating, both Bear and I have been under the weather and trying our damndest not to make W sick! My condition being as it is always likes to stick it’s head in for the worst possible times too!

I’ve been bleeding for over 2 weeks and this morning I started bleeding even harder! Like blood clots really instead or a normal mensural cycle. Sorry boys …. but it’s true. Needless to say kink and sex may not fix everything but they do give us an outlet and a connection that we have come to rely on.

I’d be worried about the bleeding only it’s not the first time, it happens more often then I like. Not normally for weeks at a time but the crazy amount of blood and lack of energy etc is my monthly normal. UGH

“Just keep swimming, just keep swimming!”

Another day, another test.

Tomorrow morning we are back to London for the 3 month checkup! Fingers crossed that W is still in remission and that the CAR-T therapy is still working.

Physically he looks great! He has more energy than he has had since last November, he is able to eat again and it seems he has stopped losing weight! All good signs! He has some of his strength back and I have been urging him to do some exercises to build and keep his strength up so that when we do go through with the stem cell transplant he will be able to tolerate and bounce back faster.

On the kinky front, Bear and I have been enjoying some intense and much needed reconnection to our way of life. The last week and a half not withstanding! lol Life never fails to step in the way but we are not backing down, my health is usually the culprit followed by W’s doctors appointments and procedures. We certainly can’t do anything about those things but we can work around them! *smiles*

Our dive into M/s has had us trying out some kinky ideas that I never would have thought we’d be interested in. Never say never I suppose. Then again, if you look at the list of ‘yeses’ and ‘hard limits’ when we started out and the list now, you’d see some stuff has simply switched columns!

We’ve (or should I say, I’ve) gotten smart about our kink and the simple fact that we make it our own! I know, I know it’s something we hear and say all the time but just like most things in life – the idea is simple, the application for some reason seems so much more difficult!

It’s opened up a bunch of new kinks that we are/and have been trying and has made our kinky travels that much more enjoyable. I think Bear has also finally found some acceptance and peace in the life that we have chosen. I think he has finally just let himself be …. that, plus my new take on communication, too!

Basically – radical honesty! Thought we were doing that before, found we could actually do more! Always learning, always trying, always talking ….

That’s what we’ve learned and that’s what’s been making even this current life situation manageable!

Till we meet again …. ❤

Just a few updates!

As I mentioned before, we’ve been home since the 1st of July, goodness it’s nice to be home!! W and I have spent probably the last 4 1/2 out of almost 8 months in hospitals. Him in a bed of course and me mostly sleeping in chairs! The stay at Sick Kids did afford me the use of a bed/couch area in his room which was such a blessing! I don’t think my back and neck could have taken too much more! lol

The first week was pretty basic, just some low dose chemo to prepare but the second and third week were hellish! I do not wish that on anyone, to watch my child go through it was surreal and scary as f*ck! I knw I don’t normally swear but ….. I just can’t even begin to explain the feelings.

He lost the ability to use words properly, what he wanted to say and what was coming out was all jumbled for a few days. He couldn’t see much, his face was swollen and his eyes bulging out and hurt like hell. He couldn’t even walk well or do the simplest of tasks without getting confused and turned around.

Trying to get him to the washroom was something else! Let me tell you. He is bigger than me, taller and heavier and he could figure out how to sit or place himself properly etc. I’ll spare you the rest of the details but I’ll say that was the most afraid I have ever been in my entire life.

I don’t scare easily, I don’t tend to lead with emotions. I’m pragmatic and no nonsense, I get to the heart of the issue and take care of business. With a clear head and a plan, everything works out as it should ….. not this time!

Thank god for the nurse who was with us those few days, she even came in on her day off for an extra shift just to be on W’s care. I think I may have very well lost it if not for her. Bear was not with me as he was travelling back to work Mon to Fri and then with us on the weekends. While there he also stayed in the apartment while I was in the room with W over night.

The worst night I did get close to calling him in, it was a weekend and he was there …. I doubt anyone would have stopped him at the door. They are quite understanding there, I just can’t say enough for those folks working everyday to help kids and parents through this. Anyway, i got about 45 mins sleep that night and was very glad to see him (Bear) in the morning!

The first weeks were hard but the next few weren’t as bad. We were still stuck in TO but at least W and I were back at the apartment by then. trips back and forth to the hospital a few times each week but it was a 10 min walk away and we had a wheelchair for W, so it worked!

By the first we got the all clear once more, the bone marrow and spinal fluid were all clear of cancer and the CAR-T cells are doing their magic destroying all leukemia cells.

We are back to our regular oncologist now and the following Tuesday when we went for a check up he informed us that the next step should really be a stem cell transplant to make sure the marrow starts producing ‘good’ cells not cancer cells going forward. Basically, it our best way to try to ensure no more relapse!

Say what now … !?!?!? We were not expecting that. We thought it would be checkup and such but as long as the cancer was gone, W could be done with all the big procedures. We all got a bit of a surprise! Nothing finalized yet but we go back on the 5th of August and I imagine we will get more clarity then.

This will mean another trip to TO and hopefully back to Sick Kids. We know the people, know our way around AND I can stay with W over night no questions asked. His panic attacks are all but gone and he has made huge strides in his anxiety BUT it’s not going to just magically disappear. Any time I was away for more then an hour or so he would text and start asking when I’d be back. I’m going to go out on a limb here and assume he is still not ready to be in hospital over night without me. But that’s a problem for another time …

If I understand correctly the stem cell transplant should be done around 3 months after CAR-T in these cases which would see us back to TO likely the beginning or September, since his CAR-T transplant was June 3rd.

In between all this Bear and I have taken any opportunity we can to strengthen out dynamic. I think it’s probably more intense now than it had been in a long time, maybe even ever really. Since we were moving towards a more M/s centered feel before all this began, we have picked up again in that same vein.

I’ll take it while I can, fill up on that energy that keeps me balanced while we are afforded the time and space to do so and let it carry us through the days we focus solely on W and his recovery. It’s a strange dance back and forth some days but we (the 3 of us) are all getting what we need and when.

I can’t say I can ask for more at this time. 🙂

Hope you are all well and happy on this Monday morning!

home …. ish!?!?

I need to get back here, i need to get back to you all! For my sake, and hopefully for yours too? lol

We are still here and we are still kicking …. and biting, and screaming and scratching … *wink* we’re here!

W and I have been home since the first of July, lots to cover and lots to update BUT Bear and I are also working on spending energy for us – so that is what this post will be!

I will update more, W’s adventures are not done but he is well. In the mean time ….

Bear and I will keep kicking, and screaming, and scratching, and biting and … and …. He is getting very primal these days. I think he may have missed me 😉

Roe v. Wade

Dear republican, conservative opinions; i wish this was new:

As the snow flies
On a cold and gray Chicago mornin’
A poor little baby child is born
In the ghetto (In the ghetto)
And his mama cries
‘Cause if there’s one thing that she don’t need
It’s another hungry mouth to feed
In the ghetto (In the ghetto)

People, don’t you understand
The child needs a helping hand
Or he’ll grow to be an angry young man some day
Take a look at you and me
Are we too blind to see
Do we simply turn our heads
And look the other way

Well the world turns
And a hungry little boy with a runny nose
Plays in the street as the cold wind blows
In the ghetto (In the ghetto)

And his hunger burns
So he starts to roam the streets at night
And he learns how to steal
And he learns how to fight
In the ghetto (In the ghetto)

Then one night in desperation
A young man breaks away
He buys a gun, steals a car
Tries to run, but he don’t get far
And his mama cries

As a crowd gathers ’round an angry young man
Face down on the street with a gun in his hand
In the ghetto (In the ghetto)

As her young man dies (In the ghetto)
On a cold and gray Chicago mornin’,
Another little baby child is born
In the ghetto (In the ghetto)

And his mama cries (In the ghetto)
In the ghetto

Songwriters: Graham David Bates, Writer Unknown. For non-commercial use only.

If you want to be responsible for the choice (or lack there of) than you should also be aware of and responsible for, the outcome.

I’ve spent a lot of time raising and lately, trying to save, my children. I know what it is to make choices and I know what it is to make some very hard ones.

I also know that I still have no right to chose for another woman ….. but I do know that whatever the choice, it wasn’t an easy one.

Stay in your lane ….

***** We’re almost home, I hope to have good news soon.

The answer is still in the stars ❤

My Masochism

Pain- I think I *like* pain, I think I crave pain when things are difficult because when it comes to pain, I know what to expect.

I know what to prepare for, I know I can take it.

Maybe my submissive self is just a control freak! lol I know I am, no question there. *wink*

I can control everything, makes me a strange type of submissive, makes my post a few back a bit more sensical, if you have been paying attention. 😉

Anyway, you know what they say – when you’re going through hell ….. keep going!

many moons ago I sent this to a friend, here, when he could still partake. I sent it because I felt it to be a power song, a show of resilience, and that’s what i’m sending to myself now.

That, and this!!

Life is short, hug your family and tell those you love.

**** Bear just left to get back *home* and to life before he doubles back this coming Friday. In case you needed me to tell you the trigger for these posts!

back to the beginning, back to my roots. it leaves little room for submissive ideals – but i’m leaving the light on*wink*

the wolf has long been my animal – the rabbit my submissive side i think

i find i’m becoming more primal and more natural these days, music, primal and strength – that’s all i can give right now.

seems we have come full circle. at least my beginnings in such stark indifference and pain have now given me something to use, the strength for the energy towards healing my child.

i haven’t mentioned because it isn’t a thing i talk about in these parts and also because i fear i don’t really have energy or want to care BUT my father also has a surgery coming up, he has had cancer and treatment twice. he’s been in the same hospital we have – i can’t say i really care.

sounds awful i know but i played that game, for many years and all it did was cost me mentally and physically. once my boys came to be i decided that anything that took from them was not a price i was willing to pay – or put on them.

it is ironic however that the same thing we fight is the thing my father too fights, and my mother too worries on, and my schizophrenic brother too tells me about.

my life now has so many things that are truly ironic and just simply – insanely linked – and yet not! Anyone fighting connections to people that you should care for, or should care for you, and don’t – well you may know what I mean. I can normally not let this bad energy in, but right now with me being my strength and with D/s being not a thing within reach .. well – i’m going back to primal.

and I’m once again tapping into my inner wolf.

Strange bedfellows

I ride this strange line, a line between dominant and submissive.

My entire existence has two parts, two inseparable parts. It makes it very hard to find people to call friends, in the real sense. If you don’t know what I mean than you probably won’t get this post either.

I’m not one who dwells on social graces or what others think or might say as a way of being. I take then into account of course because they are worth noting, but they aren’t worth living for … sorry.

What I do find is that my want for this dynamic falls into trouble when I want to find ‘friends’ with which to talk to and commiserate with in the troubles or tribulations that my mind may be going through.

Not to be offending or shocking, but this is just me getting the cr@p out of my head that is necessary. Don’t compare yourself, you shouldn’t -be original, be you. This is not a ‘how to’ post. This is also not a commentary on my blog land friends, that’s not what this is about so please don’t take it personally. It is personal that’s true, but personal to me, no one else.

But, he’s back now and so instead of being submissive I need to once again take charge so … maybe continue this later, maybe not!?!?!

I have a story to tell about a time when a friend told me a story ..because I was in a similar state and needed a dom to domme talk, to sooth my submissive soul. Confused? lol that’s okay it was an interesting story about a cabin and the super natural. His story to tell not mine, but if there is a Kitty around these parts who reads, let him know that even now it helps!!

Point is I fit in no where, i never have and likely never will. For the most part I’m fine with that – really. But there are these few and far between fleeting moments when one might fancy a call … 😉

Rinse and repeat! More hospital stays and drama, ugh.

*long one* be forewarned.

So we’re here again! Two weeks after the last admittance and we are once again back, in the same room even! lol Almost think we should have just moved in ….

Some back story to the last few weeks:

W was admitted 2 1/2 weeks ago on a Tuesday to our usual hospital for cancer treatment because his numbers/bloodwork was just horrible. He needed chemo and other products to get him back to stable and ready for Sick Kids in a few weeks for the CAR-T therapy. We did that, then went home the following Sunday afternoon.

Our doctor here had requested our family doctor back home take charge of the case and have blood work and transfusions done in our local hospital until it was time for Sick Kids. I was hesitant but it did offer much less travel and much more time at home for W and for us. He’s having a hard enough time physically so anything to ease the wait time was going to be great, right!??! lol

Yeah, no!

First off the Oncologist’s requests (and mine of course) for call back and set up of times and dates was never answered. I got a call from here telling me the appointments were being cancelled as they were to be handled in my home town. I said, no please don’t, keep the dates on schedule and I’ll call you back once we get booked here because frankly I’m afraid they won’t come through. Guess what, they didn’t!

Unfortunately, me thinking all was set and settled was silly enough to get in the shower. The phone rings, W takes the call and agrees to cancel the appointments since he is told that they are to be done at home. *PANIC TIME* I call back trying to get them reset and explain that I have yet to hear anything from my family doctor and he needs his transfusions on time. I’m afraid they will get missed …. so now nurses and practitioners are scrambling trying to get him set up again because those other times have now been filled for others. UGH!

This is now Tuesday afternoon, still no call back from our home doc …. I’ve left messages, the oncologists here left messages the Friday afternoon before! The practitioner working with our oncologist has phoned and left messages many times as well. *crickets*

Fortunately they do squeeze him back onto the schedule – that’s the Wednesday they realize how low his numbers are and he’s there all day with dad getting things stabilized again. In the meantime Dr. D’s clinic (oncologist) works with me to set up at least one more week of appointments in hopes of setting things straight here in our town by then.

FINALLY!! The damn family doctor calls back. It’s now been over a week since the specialists reached out, Apparently cancer and no immunity plus requiring stabilization for a major procedure in one of the best hospitals anywhere is just NOT ENOUGH to get his attention and response. With all those letters and names not getting responses, what chance do I have???

Explains why my chronic rare condition gets no help either, humm. But that’s for another day.

Anyway, finally we get a response, keeping myself patient and respectful, I take the calls, get the info and set appointments. Cancel with the regular oncologist and move forward. Monday we go for bloodwork, depending on results we will be back Tuesday for transfusions. Pretty much expected at this point, no biggie.

Monday we go in for 8 am. Monday by 10 am I get a call that the transfusion can’t wait, come in this afternoon, there is a 6 hour wait to get the blood products he needs but they are on the way. Okay, no problem we can do that … but wait, W has started with a nose bleed and heavy bruising again, that plus his blood counts … 4 calls later and much back and forth with the oncologist – my family doctor says we need to bring him in now. He must be isolated and we must stop the bleeding! YIKES, more panic, off we go.

To emergency he says, I’ll tell them the issue, go now! When we get there it’s packed, of course. All sorts with germs everywhere! I explain to the nurse, i explain to reception …. take a number! Umm, he needs to be isolated, she checks with the person behind the glass, take a number, I guess you can wait in the door way …. :O What Now???? Come again?

He has cancer, he has literally no white blood cells after chemo so no immunity, and no platelets so he won’t stop bleeding ….. plus the doctor told me to come here asap, that he would tell them he need to be isolated! … take a number….. *fumes*

50 minutes later, after moving him about in a wheel chair inside and outside trying to stay away from all the coughing and sneezing and germs, they finally call him in. His nose has been bleeding heavily this whole time. Lots more stupidity like this later they get him a bed in the ER.

No precautions really but at least there is a curtain, sort of closed up around us. W unfortunately over hears one talking to another saying that he’s just here with his mom, she babies him ….

Finally the family doctor shows up, all of a sudden he’s in full protective gear, triple masked, triple gloved etc and still keeps his distance because he doesn’t want to make W sick. I’m guessing our oncologist read him the riot act over the length of wait for his original call back so he finally gets the urgency. Some of the nurses though aren’t quite up to speed I don’t think. Pretty sure it was after that when W heard the comment :/

Big surprise, after hours in this mess W spikes a fever! I finally got his nose to stop bleeding but they didn’t let us leave despite my saying he would be better at home to wait for the needed products, safer. And now this …. shit hits the fan, I guess they finally realize I wasn’t the one in the wrong.

Two, yes two units of blood have been lost from mornings lab work to now. That is how much his nose was bleeding. Damn fools. The ER doctor didn’t quite believe it, many tests are ordered to try to figure out where else he may be bleeding from. Nothing, maybe she does believe now, anyway.

We go from the ER to the ICU, await blood from all over hells half acre … hours later, 4 more units of blood he needs to get stable! YUP totally babying him, yup totally fine to stay in the waiting area for close to an hour. For F*CK sakes!

The following day we are told he is getting transferred back to the usual hospital, they are better able to treat him and ‘home’ doesn’t have the knowledge or resources. The first part I could have attested too earlier! So here we are again.

Been here since Tuesday, we decided to drive him here ourselves and get released from one hospital without waiting for transport. We would have just been stuck in the ICU with all the other sick people until likely midnight or longer. Not a waste of time we wanted, or risk for that matter. We wnet home, grabbed a few things and were admitted here by 6:30, we had left the other at 4:45, not bad turn around if I do say so myself. The trip itself is almost 1 1/2 hours.

It’s Thursday now, we should hopefully be on the way back home Friday afternoon. You’ll never guess what, they want follow ups done here, not in our home town ….. 😛

At least here he is safe! Got word tentatively that we will be going to Sick Kids next week anyway. Scary and exciting at the same time. The procedure is dangerous and the first 2 weeks after will likely look very scary I’m told but that should then change for the better and the rest of the stay for follow ups there will be as outpatient, set up in our own private little apartment close to the hospital.

*exhale* long post I know, lots of stuff not even covered but here are the highlights.

Till next time … be well! ❤