Universe – please let up a little… July 26, 2018

So I haven’t been here for a bit again.  And the problem is the Universe just will not let up – even a little.  Hubby has one chemo session left – and for that I am thankful. 

I have written before about the anxiety this brings – so I won’t dive in to all of that again. 

On the other hand – hubby also has shingles – and dammit – why is it that once you have one horrible thing you are automatically prone to so many others?

There is this idea that seems to float around about karmic balance.  As far as I can tell it’s a kind of unspoken agreement we feel we all have with the universe – a thought process that implies that somehow the universe is fair.  Its also horrible for those of us who get hit with things like cancer or MS or any other chronic condition and the wasteland of horrible things that come with it.  Because it implies that either we deserve this, or that we did something to deserve this.  The other one I hate is that god apparently won’t give you something you can’t handle.  It is another kind of balance the universe type thought. 

The thing is that dwelling on all this supposed balance in the universe, or even on the concept of fairness is draining in its own right.  I could rail at the universe for days – in fact I admit I have been a bit angry with the world in general.  It takes a lot out of you to be angry at the world.  Every time we get hit with something else I go through a process where I have to be angry, and resentful and it takes more self-talk to bring myself around each time to the normal place.  The place where the whole family isn’t on the trigger waiting to explode over the unintended wrong word or fall apart over every small thing.  Each time it happens I am not alone, the whole family goes through it too – and we all move at different paces – but you can bet there will be at least one day where our worst feelings coincide and we are unable to reassure each other that everything will be OK, because we just can’t find it in our hearts to believe it will be. How can I reassure those around me when I am grasping for it myself?

We aren’t a family that is ugly to each other.  But on those days – we are.  We lash out at those we love the most because the fact they need us to be better is draining and difficult.  This is the hard part.  This is the hard part about all of it.  On our good days <which are most of them – this is important to know> we recognize that we are all humans going through something hard.  But on our bad days we are angry, and we are angry at the world and betrayed by the concept of fairness in the universe.  

It’s very hard for me to say the anger has a place in our world.  It does have a place though.  If you can’t ever stand up and say that THIS is UNFAIR – then you are shoving that feeling away, and in our case at least, it always gets out; the longer it is stuffed away, the meaner it is.  You need to be able to acknowledge anger.  I know I am sunshine and roses a lot of the time, and I work very hard to mentally stay at peace with things, but you really can’t help but be angry sometimes – and not acknowledging it is hardly positive.  The only takeaway here is that for us – what it means to be a couple, to be a family has evolved to contain room for something else.  That something else is the right to be angry with the world and to be forgiven for it. That it is OK to not be strong enough some days to deal with it all, that extending patience to someone who needs the same can be hard. 

But also, that letting go of the idea that life is fair can be kind of empowering, even if it takes a lot of crap to get there.

Two to go… June 29, 2018

Hubby has only two chemo sessions left.  Two-2-to-too…<yeah I go a little incoherent here.  The thing is it has worked.  His PSA is at 1.8 and given that we started at 6800…this is something to be VERY happy about.

Right now it seems like life might return to somewhat normal.  We actually went on vacation this year – a crazy road trip of over 3,000 miles, 5 national parks, 5 states and a new appreciation for each other and home cooked food.  Yet it looms in the back of your head..he did it. He made it through this round of treatment.  How long are we good for?  How much time did this buy us? But that is the problem  – some questions just don’t have answers.  So when we walk out after the last session – its like we are walking into a dark hallway – we know its a hallway – we just can’t tell what is at the end or where it ends.

Still it is summer – summer has always been my happy place – and although it is harder for me with the heat (MS and heat do NOT play nice) the longer days, the more relaxed feeling that seems to settle in with late dinners and later night strolls, its where I am happy to be right now.  I read a lot about dealing with the things life throws you, and have learned from a variety of sources that resiliency can be cultivated – the ability to go through life’s bumps with grace – can be cultivated.   Practicing gratitude, which for me is a kind of meditation on the good things is a key to being resilient. I have to sometimes work very very hard (much harder than I like to admit) to find the bright spots.  And I am not convinced that internally I am as resilient as I am externally.  But despair and fear are part of the chronic illness journey – as present as they can be in my life – they are not the face I want to wear around the world.

As far as knit? still knitting dishcloths – can’t seem to help myself.  They are meditative knitting – the kind where you don’t think, you just knit.  And the ability to focus on something that is not cancer, or MS, or work, or any of life’s other stresses, to just mechanically do something where you can live in the moment – or just be in the moment  – or not even acknowledge the moment – that’s a whole different kind of thing.

 

 

Long Day…. May 29, 2018

Tomorrow is shaping up to be an incredibly long day – while recently I have been pretty focused on Hubby’s health – tomorrow I have to spend some time focusing on my own.  My Rituxan infusion is tomorrow – Rituxan being the drug that keeps the MS at bay.  And while it isn’t HORRIBLE – it’s NOT a day at the park either.  Anyway in an effort to not take too much time off of work – Hubby is also doing chemo tomorrow.  And while I am appreciative they could squeeze us in on the same day – we are not at the same time – but more back to back.  I will be relinquishing my chair about the time he will be needing one so its going to be a really, REALLY long day.

I am not sure why anyone would care about this at all – except I can say – there are real challenges – both financial and logistical to managing a family and chronic illness.  Had we been scheduled on separate days – we both would have needed two days off, which really is counterproductive.  Having to take time off to remain well enough to work.. well, yeah.  You see my point.

Been a Bit… May 25, 2018

I know it has been a bit – so here is the quick update –

Chemo is doing the trick – or maybe Lupron is- but Hubby’s PSA is now down to 13 – which is a totally reasonable number given what we started with.

At any rate – since he is tolerating chemo pretty well, we are playing the how low can you go game and signed him up for four more sessions.  He is entirely thrilled about this development (or not).

And I find myself wandering around in a brand new forest with totally different trees.  As we went through this whole chemo bit, the end game was clear.  It was to get my hubby better.  Only now that we are at the end I realize we are better, but we are also standing at the edge of a moving precipice.  He is better FOR NOW.  For some unanticipated length of time.  Until he is not.  So I keep thinking I am getting this – I am learning how to live with this hanging over my head – and then it throws a brand new thing at me and is all “surprise – look what I found right around the next corner!” and it ALWAYS requires me to rethink everything.

I tell everyone that it’s all OK – that you can’t really dwell in fear and what not – life won’t let you – like it or not you find yourself just living,  grocery shopping, paying the bills, walking together like you always do, and laughing together while you go about it all.  Still sometimes we walk around the elephant in the room, sometimes we laugh about it, and sometimes we rage at it.  Privately I am melancholy about its presence. Privately I sense that hubby is still raging and may never stop. I rationalize that this is what resilience is really like.  Resilience is simply doing what you always do despite what the world does to you.  It makes me happy and sad at the same time.  I mean its so simple – keep calm and carry on – but its also like the duck – calm on top and paddling furiously underneath.

On another note – we finally dined at White Fence Farms last night – for all in Denver I think this is a required thing.  Hubby and son were less than enthusiastic – but I found it charming and the food was A-OK.  Although really it was like eating at a Kansas funeral – fried chicken and mayo based salads, so if you ever had a really good Kansas funeral meal cooked by the ladies auxiliary – then you get it.  If you have a hankering for that type of food but are not fond of church basements and funerals, then White Fence Farms is your place.

And if you are still here for the knitting – I have been playing Zelda – and that has consumed all my knitting time- BUT I have been Ravelry lurking and dreaming of new shawls and cardigans – so something is bound to hit the fan soon – either I will find out what size needles are NOT in use and start something new with them or I will actually pick up something and finish it – but I figure why not surprise myself – everyone else surprises me 🙂

 

 

Two down – four to go….. February 14, 2018

Hubby did round two of Chemo on Monday – he is tolerating it pretty darn well this time.  That said the hair is starting to go.  I guess it is fortunate that it just looks like it is thinning so it doesn’t look too patchy yet.  He hasn’t been a hat wearer for some time – so trying to find hats that he can wear at work and that will be comfortable is a bit tough.  Mainly he tends to run warm anyway – so most knit stocking caps are out – I did find some made of t-shirt material – but they are slouchy and score a no go on the wear at work front.

I was actually thinking it wouldn’t bug him to be bald – I mean a lot of guys are bald and he wears his hair really short anyway.  But when you start to think of it – it is really one of the first really outside visible signs that he has cancer.  In fact, the sudden hair loss is kind of like waving a flag and shouting it from the rooftops.  For him, this is worse than any vanity about hair – it is inviting people to question – and that is very much not his style.  Honestly – this blog is not his style – but he realizes it is mine and that we are mutually coping – so he puts up with it.

There is still some minor swelling in his lower abdomen – but it is shrinking by the day – and for that we are thankful – but I still wish beyond wishing there was someone out there who could tell me this would all be OK.

I had counted on them running his PSA levels again this week before Chemo – but the Dr. didn’t want to run them again until he has another chemo session under his belt.    I am so torn about this – in terms of husband’s anxiety – I see the point – we have physical signs this is all working – and his number was so high to begin with – I think that it may still be higher than he will be comfortable with.  Me?  I just want to see the number.  But to a large extent – while this affects both of us in huge unforeseeable ways that we discover every day – this is his – he owns it in a way that I don’t. So I find myself needing to defer and think more deeply about respecting his choices and not pushing my will onto him.  In the long run I fear I will really need this skill – and it terrifies me.  I beg the universe every single day to not let that time come ever.

In the mean time I am going to try sewing a couple of hats this weekend – and maybe look for a light weight cotton to knit something out of.  At the same time I don’t want to make these things, only because making them signifies something to me.  In a way I am only starting to accept this – and I don’t want to accept this.

Rolling like a ring ding… February 9, 2018

So on we go – if not mindlessly at least obediently.

Hubby has started Chemotherapy – round one down, round two next week – four to go after that.

I have started a more unique game of torture for myself – one where I sort through medical stuff that varies from “I get that” to “This is so far over my head it has an orbit”. The goal of this game is to know what our outcome will be.  To KNOW the answer to the big question – will my husband be OK?  The torture part is that there just isn’t an answer.  You can’t know.  There is no medical miracle that can give you the answer.  There is no belief system that can give you an answer.  It is just a question hanging over life as you know it.   Oddly enough life keeps on – pretty much just as you know with – with a little more chemo and a little darker humor – it just keeps on.

So – here is what I think I know:

This whole stage IV metastatic prostate cancer is scary no matter how you slice it. The fact that it is his lymph nodes seems to indicate that it may be kept in check over a longer term of time.  We are treating it aggressively.  And I think I have to be satisfied with that.

He tolerated his first dose of Chemo pretty darn well – the second is next week – I am hoping very much that we keep just rolling along –

For any who still give a rat’s rear end about what I am making – currently about 1/2 done with a chunky long cardigan – something that looked ridiculously comfortable.  Since my stress levels shoot through the roof at random moments – I find that I have been gravitating towards comfortable things – comfortable clothes, comfortable foods, and comfortable people.

 

 

Updates… January 15, 2018

Less than a month ago what I knew about prostate cancer fit in a thimble.  Cancer was a statistical long shot to me.  Until it wasn’t.

I am still unsure of many things, but it has been a relief to find that some men live many years with prostate cancer – even stage IV prostate cancer.

Our case is decidedly odd – I can’t find others whose diagnostic path followed my husbands, but diagnosed he is.

He has started one treatment, and will start a 2nd treatment soon (ADT and Chemotherapy).  I am pretty sure we can’t live every day in a fog wondering how long he has – so we haven’t really focused on that – right now we are focusing on the hope that this works (we know there is no cure at this point in time) and that medical science is smart enough to buy us a lifetime.

And there is is – life just goes on –

At any rate – I have read a book (The Pillars of the Earth by Ken Follett) and it was highly satisfying to have actually finished SOMETHING.  And I actually crafted – a little – I am doing a silly embroidery from Mollie Makes magazine – it appealed to me because everything you need was in the little kit – thread, needled, cloth, hoop and pattern, and it was small – nothing too crazy – just enough to be satisfied that you have made SOMETHING.  In the same fit of optimism I ordered a bit of chunky yarn – hoping that the knitting is fast. I guess that remains to be seen – no photos now – that would require a level of organization beyond where my spirit is at the moment – but hey – maybe one day.

 

 

What’s New… January 5, 2018

So- what’s new right?

I am sorely lacking in craft content, I could go back over all the stuff I have done, started and not finished or maybe even the things I have though of doing, but things have been turned upside down in the world here.

My husband has been diagnosed with Stage IV Prostate cancer.  Which is about as out of the blue as it can be in your worst nightmares.  Honestly if you looked at him you wouldn’t know he was sick – other than some water retention in his lower extremities – he is fine – he feels fine, he looks fine.  But medical tests tell otherwise.  They show he has a prostate cancer that has spread to the lymph system.

This is all we know right now, it is a tiny, scary crumb that has me thrown for a loop.  I am writing not because anyone follows this – but because I am at a loss – and maybe someone else has been here in this very spot.

We will hopefully know more next week – the Docs want to discuss among themselves – a fact that is both comforting and terrifying.

Until later, keep Mr. Mintlatte in your thoughts – as I go through this I may decide to post more – but I am new at the whole caregiver thing – my husband is my person, but this will be a whole new level – and I am only now beginning to work through it all in my head.

5 years later – February 16, 2016

Holy cow – decided to check my URL as I couldn’t remember if I renewed this year – apparently I did, or should soon, or something like that.

When I logged into WordPress (I remembered my login!) it kindly tells me it has been 5 years since my last post.  5 years. I feel the need to say that again 5 years.  And I am writing here even though no one reads it because reading it myself…well it was nice to get a refresher course on my life.  Some things to note: Teenage daughter is no longer teenage daughter.  According to the laws she is now adult daughter.  Boy has been downgraded to Teenage boy.

In other news I have knit many..many lovely things, but I am posting them all on Ravelry these days. I am mintlatte there too if you are interested in knitterly things.

Also noted – a pair of socks that was on my needles 5 years ago is STILL on my needles. I am pretty sure I wasn’t happy with the gauge, but it has been so long I honestly just don’t remember.

By way of documentation – so that I don’t end up here 5 years from now and find myself curious:

1. Work is OK.  I am pretty happy most days and I get to work on some good projects.
2. Hubby is still hubby. He is likely to remain that way.
3. The kids are still relatively normal kids – at least as far as I can tell.
4. I am currently working on Hiraeth – a lovely shawl that I have not photographed yet.

 

Since I don’t want to bore myself with details – let’s just say I will see you again in 5 years  or maybe sooner – depending on life.

Mid-pedicure post …. July 2, 2011

No worries – I don’t have some stranger polishing my tootsies – I do my own pedicures. Aside from the fact I am a tad bit creeped out by people who are actually ok touching stranger’s feet – it is a lot cheaper to take care of your own tootsies.

I was going for a patriotic red blue and gold look, but sadly my red polish is clumpy – so it may not make the cut. 

In honor of the patriotic season the hubby kids and I ventured out last night to a fireworks show near the house. The nice thing about fireworks once a year is that you kind of forget how awesome they are in between. You forget that some of them are loud enough that you can feel the boom, you forget the noise as it echoes back like distant thunder. You forget the lights raining over you that little fear that something might land on you.  You only remember the ones that boom and then sizzle into so many tiny light flowers when you see them again and as short as the show seems, in the end it almost seems worth the traffic and the people and the crazy that is going to any event in the city with a crowd anxiety ridden husband, a teenager and one shy boy. 

In knitting news I have reached heel point on a new pair of socks, and since the last 8 pairs I have ended up ripping since I just didn’t like them – this pair is at least encouraging. I have discovered through the help of Ravelry that I have high arches and perhaps need to modify sock patterns if I expect them to fit properly – so my hope is that this pair will finally fit properly. I figured I would use an inexpensive yarn just in case this whole experiment with modification didn’t work, then I wouldn’t feel like I had to rip it out and start over, so I am using some lion brand sock ease from stash, the only problem is I truly like this yarn…for the price point it is as nice as some yarns I have spent twice as much for. If it holds up to wear I will be truly impressed.  I just wish it came in solids as well.

No sock pictures today though, it is simply a yellowish sock in plain jane ribbed top stockinette down. If it all fits well it may merit its own post simply because posting about it while it is still in my memory will at least give me a reference point for future pairs.