Life's Journey

 

Today's post - Life.  Not weaving.  As such.  Ignore if you're only here for weaving content.

I live with cancer.  I was diagnosed with Small B Cell lymphoma in 2011.  In one way it was a 'fortunate' diagnosis insofar as it is 'indolent' (slow growing).  At the time the gold standard treatment was chemotherapy (including Vincristin, derived from mustard gas).

I fared well on it.  In the end instead of getting 8 infusions, I had only 6, and then I was put onto the Rituximab maintenance protocol - the first person in the province.  I was lucky because the oncologist was new to town and the province and he had developed the maintenance protocol, then fought hard to get permission to treat me with it.

He told me at the time that he had been having patients achieve a 6 year remission and I became another one of his patients to also have an extended remission from treatment.

Because you see, Small B Cell lymphoma is not - at this time - curable.  In other words, it will come back.  It may come back sooner.  It may come back later, but it seems to come back at some point in the future.

The next step in treatment was an oral medication and I took that for a year until the adverse effects became untenable.  I went off the drug and was monitored closely to see how the cancer would act.

Getting my system clear of the medication meant I felt better than I had been - until other parts of my body started breaking down.

It's been several years now and I am once again considered to be in remission.  Apparently I am one of very few people with this type of cancer who has managed to NOT require treatment for an extended period of time.  Again.

I am monitored, though, because the assumption is that at some point the cancer will come back again.  So every six months I go into the cancer clinic, get blood drawn, and then go back to find out - am I still in remission?  Or not...

Today is that day.

This six month cycle is one of first relief when I find out that I am still in remission, then stuffing all thoughts and feelings about living with cancer into the back of my mind.  Until covid.  And then I had to keep that awareness of a compromised immune system (B Cells are one of the two cells vaccines target to 'train' to identify covid - and mine don't work - hence my immune system is only half as effective as a healthy persons - at best).  It has been 2 plus years of riding the cancer clinic monitoring appointments while being hyper aware of the fact that I am at high risk of becoming seriously ill up to and including death from covid.

I'm tired.

People tell me my constant harping on covid isn't healthy.  I need to just ignore it and live my life.  What people don't understand is that if I ignore covid my life won't last very much longer.  We are, everyone of us, living on the edge of life and death and catching covid will flick me over that edge.

So I cannot ignore covid.  I don't accept invitations to gatherings because I don't know if the people there will be aware of covid or care if I catch it from them.  Because they may not have been wearing a mask and are asymptomatically infectious.  So I just don't go.

I continue to isolate myself, by and large, from the public.  I wear a mask when I go out.  And I watch the numbers to try and figure out the level of risk in my community.  

Right now the numbers are higher than I feel comfortable with and once again I refused to accept an invitation to a gathering that I would have liked to attend.  But it was a Spring Tea - which means masks off to eat the goodies and drink the tea.

And too many locals have been reporting they have contracted covid the past couple of months.  All vaccinated, all with 'mild' symptoms.  Which is great and I am relieved to hear that they haven't gotten terribly ill.  But with my immune system, now completely trashed after a severe outbreak of shingles?  I declined.  Regretfully, but I declined.

It's time to get dressed and head up to the clinic and find out - am I still in my rare remission?  Or nah?

I will hold this post until I find out.  And be grateful for the sunny day which means I can park at the mall and walk up the hill to the clinic.  A little ritual I go through every six months.  Walking up the hill with trepidation.  Down with relief.  Hopefully.

Later...

Relief.  For another 5.5 months, when the anxiety begins again...

Roller Coaster

People like me who live with a disease like cancer frequently use the roller coaster as a metaphor for the journey.

Cancer is no longer a death sentence, depending on the type of cancer and access to good medical care.

I was extremely fortunate in that just as I presented to the local cancer clinic, a new oncologist had arrived to begin practicing here.  Happens that he was very experienced in the type of cancer I have and had actually developed a protocol to treat it.  At the time the protocol was not approved in this province, but he fought for me to get it and managed to get approval for me to benefit from his experience and knowledge.

But just because I was in remission for six years afterwards didn't mean I was 'cured'.  In fact I lived with that fear of return before every check up.  I did so well that my check ups went from every three months, to every six months to once a year.

And then it came back.

By that time, however, break throughs were being made in the treatment of the cancer I live with and instead of chemo again, the new oncologist put me on a 'miracle' drug.  Instead of poisoning my entire body with toxic chemicals in hopes of killing the cancer not the host (iow, moi) the new drug targeted just the rogue cells.  Unfortunately, while it worked extremely well to kill the cancer cells, it also did a number on the rest of me.  Commonly called 'adverse effects'.

And so I hit the portion of the roller coaster where the peaks became higher and the drops more stomach dropping.

Roller coasters are not a continuous round of sharp ups and downs - they give a few seconds of respite between rapid corners and stomach turning spirals.

And so does living with cancer.  At least the type of cancer I have.

Right now the peaks and valleys are fairly low.  I go in for check ups every six months.  Mostly I ignore the fact that I have cancer like a black cloud looming over me - like the cartoon character from Dogpatch - because for most of the year it is pretty far 'behind' me.

But I cannot forget for one minute that it is there.  And as the time for my check up draws nearer, I spend more time thinking about it - is this physical issue cancer?  Or allergies?  Is that physical issue cancer?  Or pandemic stress?

While I have gotten pretty good at isolating such thoughts (swimming in De Nile is not always a bad thing), the closer the appointment, the more I think about it.  Is it back?  Or do I get another 'pass'?

So I ride the roller coaster.

To those people who ask how I am 'celebrating' still being in remission?  I don't 'celebrate'.  As the stress of the 'not knowing' shifts to 'knowing' the remission holds, I can once again take a deep breath and shove the black cloud further away, further behind me.  Unless I detect symptoms, my next appointment is in six  months.  In the meantime, it will be back to weaving.  I still have way too much stash.

But the cancer, plus cardiac, plus my age, mean that I am three times susceptible to the Covid-19 virus.  So, because I can, I will continue to isolate as much as possible.  If I need to go out (as I do today) I will wear a mask.  I will sanitize my hands, mask, etc., when I get home.  I have the privilege of being able to self-isolate, so I am removing myself from the line of transmission as much as possible.

We are all riding the pandemic roller coaster.  Some of us just have extra twists and turns in ours...

In Spite of Everything

I use this blog as a diary.  A place to work through my thoughts - which can oftentimes be quite scattered and need to be corralled.  A way to sort through the emotions of a situation to discover what I actually think about something.

This summer has been...challenging.  In addition to the general stress of living and trying to keep my business running, there is the on-going struggle with adverse drug effects.  Then nearly four weeks of smoke pall.  I'm allergic to smoke and was aware that I was struggling with that, but not how much until I left for a couple of weeks and my body was able to breathe again without also inhaling what is, for me, a fairly significant allergen.

The drug I'm on has a list of adverse effect and I am having a lot of them, the most annoying one the sinus drainage, the second most annoying one (the two flip-flop on the list daily, sometimes hourly) is the feeling of being too tired to do much of anything.

I told a friend last night that once again I am in the position of trading speed for longevity.  Because the drug is working to keep the cancer under control.

Over the past few evenings I have been reading some of my posts from 2013 and into 2014.  When the hope and optimism was high.  I was in remission from the cancer, didn't need any drugs beyond the small amount of blood pressure medication I was on.

Until the wheels fell off late 2013 and in June of 2014 I was informed I was on the list to become a member of the 'zipper' club.

It was a bit of an emotional roller coaster as I re-lived those months.  And those emotions.   The high of being in remission.  The low of facing major surgery.

Well, I made it through all that and once again thought it would be smooth sailing.

And here I am.  Still.  So many aren't.  Because during that time period several people I know lost their battles with cancer.  But here I am.  Benefiting from modern day science/research, taking what my oncologist called a 'miracle' drug.  A drug that targets just the diseased cells and leaves the healthy ones alone.  I only have to deal with a list of annoying adverse effects.  A trade off I am (sort of) willing to deal with.  Because what is my choice?  To stop taking the drug and let the cancer have it's way with my body.  And I'm not ready to let that happen, yet.

So in spite of everything - the stress, the big projects (when will I learn?), the tired, the constant sinus drainage (and all the other adverse effects which are merely annoying), I managed to keep weaving.

Yes, I had to work hard to make myself go to the loom.  Yes, I was less productive than I would have liked to be.  But I did it.  And I have a respectable amount of textiles woven, some of them ready to be tagged/priced and put into inventory.

The above photo isn't all that I've done this summer and into September.  There are shawls as well, and tea towels, and table runners.

I will be going into the craft fair season with a reasonable amount of inventory.  The conference is coming together.  The Book is being worked on.

And I keep going.  In spite of everything...

And Life Goes On

I came home to a boat load of critical deadlines which took me several days to wrestle to completion.  It was a stressful few days while I dealt with them, several times messing up because I was rushed, or not thinking clearly, trying to bushwhack my way through my must-be-done list.

Lurking in the background was my check up at the cancer clinic today.  Was I responding well enough to the lowest possible dose?  Or not?  If not, what then?  I didn't know.

Turns out I'm doing just fine in terms of keeping the cancer under control.  I do still have adverse effects, although they have reduced somewhat in intensity.  It would appear for the next few years, this is my new 'normal'.

As such, I am now gearing up to keep plodding forward - with a reduced commitment - once the book and conference are done.  Just another 7 or so months for the book - if I can keep to schedule on that.  Just another 13 or so months for the conference.  The wrap up will largely be in the hands of the treasurer so once the event is over with, my input will be minimal.

I have just been approached to teach again at John C Campbell in Sept. '19.  I've said yes.  Not because they pay well, but because it is near friends and I can piggy back a trip to visit with them while I am in the area. 

And because I am just a sucker for helping weavers understand their craft at a deeper level.  In the meantime, I hear there are *already* six enrolled for Sept of this year.  Six spots left.  Just saying...

Seeking Balance

Yesterday I had a good chat with the nurse practitioner as we seek to find balance in my treatment - sufficient drug to control the cancerous cells, not so much that I have to deal with adverse effects.  To that end, I am now on one capsule per day.  I am really hoping that this works because there is nowhere to go from there...

In the event that I will still have some degree of adverse effect to the drug, I am having to also tweak my life. 

The things that are important become clearer when 'normal' changes to something...less...

My long range goal for the past few years has been stash reduction.  So I will continue to work on that.  As I use up the things I'm not all that fond of, I am hoping to pare my stash down to my favourite yarns and not have these other challenges staring at me from my shelves.

The next six months are getting very crunchy with deadlines but roughly these are my priorities (I tend to use this blog to sort out my thoughts and make them more real by writing them down)

Book projects.  The warps above started out as a book project.  But I'm also using up stash that is not necessarily readily available, so I will use one of the ones that is made entirely from Brassard yarns, rather than the ones where I have dipped into my non-standard stash in order to use it up.  Then I got captivated by playing with colour and went a little nuts pulling lots of combinations that will all weave up into table runners.

Because I also need table runners for inventory for the up coming craft fair season.

In addition to the above heap of yarn/wound warps, there are also 4 place mat warps wound, ready to be woven. 

Then there is the warp Doug just beamed onto the AVL - for more table runners - those ones a little more dressy than these will be with their textured/slubby weft.

One of those table runners will likely go into the book as well, perhaps as part of a 'gallery' of textiles for inspiration, not necessarily as a project.  OTOH, just because it is 16 shafts doesn't mean I can't include it as a project.  Hmm.

I have also volunteered to weave samples for another weaver.  Those will have to be done in a small window of opportunity in May.  A window which may be closing to a much smaller window at the possibility of a level one in Cape Breton looks more feasible.  There are 5 registered - we need 8.  It is quite possible three more could register before April 28.

In July I've arranged for a photographer to come and deal with the masses of photos required for the book.

I have also just 'volunteered' to weave a project for Handwoven - due in August.  Surely I can do that with no problem?  I can also piggy back a book project onto that warp, so...win-win?  If they are interested, of course.  They can say no if my proposal doesn't fit their theme.

Then there is the possibility of an on line class to be taped in August.  I will follow up on that soon because I still have to prepare for that - IF it will go ahead.

And that just takes me to the end of August...

Cycles

Day one of a new calendar year. The cycle repeats.  

I am already well into production for the new year.  As soon as I got home from Vancouver I started winding warps for place mats. And weaving them.  And winding more.  These are currently in the queue for weaving, while some have already been wet finished and hemmed, more are ready for the water.  

In between a couple of special commissions took some time. 

And of course, the holiday season, although with just the two of us, we never do very much.  Just another potential work day. 

The other thing I have been dealing with is crushing fatigue due to a return of the lymphoma.  After talking to the oncologist and weighing options I will try one of the new targeted drugs.  Knowing someone who is already taking it has given me hope that this blip in my health will be a minor inconvenience, not a major upheaval.  

I have a few deadlines in January, a trip to meet with a book editor and then in February I will focus on my health again, with lab work, consultations, and hopefully approval to start the new drug. 

We live in amazing times with new cancer treatments coming along to help people live their lives.  To make (some) cancer a blip.  Thank you to the researchers, doctors and drug companies working on this puzzling, challenging disease.  

Backup Plans

obligatory weaving content

I'm a planner and I really get very uncomfortable when I can't get answers, don't know what might happen - or might not.  A friend says I must be up to Plan M by now....

This is all to say that the uncertainty of my future was reaching extremely uncomfortable levels - not knowing if I should even attempt to book teaching events, if I would have to suddenly cancel all my commitments.

So one of the burning questions - indeed, the burning question I had for the oncologist today was - when can I expect to need to set aside 6-8 months of my life again to concentrate on treatment?

He was very honest and said that conservatively I can expect an 18 month remission from the last Rituximab (the end of May, 2013), that once it comes back - because it is indolent (i.e. slow growing) - that treatment would likely begin 2 to 3 years once 'relapse' has occurred.

So, conservatively, I can expect to have the next 4 years fairly 'free' from worry in terms of booking teaching events.

This is a huge load off my mind.  I make a fairly large percentage of my income from teaching and not knowing what to expect was leaving me feeling like I ought not book anything.  Knowing something of what lies ahead, I feel confident that I can make those bookings and follow through on them.  

But that isn't all.  I returned home from my appointment at the clinic to an email confirming a date for the Next Big Project.  It is far enough away that I can make it through the current show season, do my teaching commitments in the months ahead and still have time to do all the preparations that need to be done in order to be ready.

I haz a happy.

Exotic Marigolds

Best Exotic Marigold Hotel


I rarely watch movies these days.  When I do, I prefer to watch them at home where I can hit 'pause' and move about.  Too much sitting and I tend to stiffen up.  Not to mention most movie houses have the volume up so high my ears ring for ages afterwards.

But this movie (click on link above for trailer) was highly recommended and since I will watch almost anything that has Judi Dench and/or Maggie Smith in it, I bought it when I saw it for sale at Costco a few months ago.

Several people have commented to me about my great attitude.  Believe me, I'm no Pollyanna.  I have those dark moments when the niggling worms of fear raise their heads.  I've learned that I need to vent and get them out of my head into the light of day.  The light will always show up those fears for what they are, and after confronting them I can chop them down to manageable size.

Acknowledging my fears takes away their power, I find.  (And bless my friends who let me vent!  You know who you are!)  And since fear is just an emotion, allowing it to evaporate in the power of light is the fastest way to encourage a different emotion, a healthier emotion, to take root.

Recently I watched the movie again with a friend.  There is one line that I want to remember because it seems to sum up everything I feel about life.

It goes something like  - Everything will be all right in the end.  And if it isn't all right, it isn't the end.

Life is a journey.  Everything will be all right in the end.

Bonus Time

It is now 24 months since I finished the last dose of chemotherapy.  I am well into Bonus Time as the 'norm' for this type of cancer is 18 months.  But we all know I'm not 'normal', right?  :)

Even though two oncologists have been less than supportive of the 'up to 6 year' remission quoted by oncologist #1, I am going to go for it.

At times I worry a bit about booking teaching dates a year or more into the future - will I have to cancel?  But I refuse to live my life worrying about and fearing what is to come.

Let's face it, no one knows their 'best by' date.  There are no guarantees.  I could get run over by a bus tomorrow, never mind anything else that may happen.

So it means I may have to take another year 'out' while I do chemo again.  That means I'll still be here.

The thing with entering the world of cancer treatment is that you find out just how many people are on the same journey.  Some get cured.  Some live with it daily.  Some, like me, get a reprieve.

In the meantime I will enjoy each day as it comes.  As the poster on Facebook says - do not regret growing old.  It is a privilege denied to many.

Double Edged Sword

warp 21 (I think) beginning

further along

near the end

next scarf

When I began this blog almost 5 years ago, it was by way of being a celebration of returning health and weaving.

Little did I realize it would be a celebration of weaving in spite of continuing health issues....

It is never easy to run smack into the destruction of the myth of good health and immortality.  The first time I truly came to the realization that we are mortal was the death of my father when I was 25.  My reaction to his dying and eventual death was to completely turn my life around and commit to becoming a professional/production weaver.

While I grieved for the loss of my father, the loss of innocence, if you will, and came to grips with the fact that if we don't live life while we have it, I studied the construction of cloth and how to enter the marketplace with what is, to all intents and purposes, a luxury item.

Over the years I 'forgot' about the reality of aging and the loss of health.  I lived a healthy lifestyle.  Ate healthy foods (within my allergies), got exercise (yes, weaving the way I do it is aerobic), stayed active within my community and assumed I would continue to live this way for at least 30 more years.

Until the next reality check - my brother's death, my subsequent discovery of more health issues lurking than I'd suspected.

Once again the myth of health exploded, not once but several times in succession, along with a dollop of other things like a broken ankle, adverse drug reactions, etc., etc.

So while reality has intruded, it has also given me the gift of seeing what is really important in my life.  It has given me the incentive to say 'no' where appropriate, and 'yes' when it is.  It has made clear my priorities.  I am able to stand back from the general melee and choose where I invest my dwindling time and energy.  Instead of carrying on doing what I'd always been doing, I am able to step back and decide that no, I'm not actually going to continue to do that.

In many ways not knowing when our 'end date' is going to occur is a blessing.  We can continue to ignore the fact that we are mortal for much of the time.  We plan on doing things one or two or even three years in the future, confident that we will actually be around and in shape to do them.

But deep down, while I plan to be around for a good long time yet, I also know that there are no guarantees, that none of us gets out of here alive, that eventually the clock will wind down.  Living life is a lot like weaving these painted warps.  The future is hidden, what is coming isn't known (although it can be predicted somewhat), things change as it goes along, but always, it is beautiful.

The CT scan was clear - the niggling worm of doubt, the reality of, well, reality, can be stashed in the back of my mind for another 3 months....but please forgive me if I get a little crabby every three months when reality is pushed into my face again....

Longer Days

The days aren't actually any longer - they still come with 24 hours in them - but the day light is coming earlier and leaving later.

I'm still fighting through a lack of energy and not accomplishing nearly enough during the day, but at least I feel like I've made some progress this week.

I now have tickets to Sweden.  The trip over is going to be a killer journey, but there will be several days in which to recuperate from the jet lag before we leave for England and Scotland.  We will go directly to Scotland where I will present a one day Magic in the Water near Aberdeen on May 4 and then we will wander southwards, hitting as many textile related museums as we can before returning to Sweden for my trip home and last Rituximab treatment on the 22nd of May.  My understanding is that after I'm done with that I will meet with the doctor(s) at the clinic every three months for monitoring - but that will be confirmed after treatment #8.  And then I will have to factor that commitment in when I book teaching/trips.

Right now I have only the one teaching event in January of 2014.  I would be nervous about that but the past 5 years have taught me that usually the universe clears the decks in order to bring on something else - something that I have not anticipated - but generally works out in the end.  While I have a couple of irons in the fire, I was hoping they would happen this year, but who knows?  Maybe they are going to happen next year instead.  This year is already pretty fraught with commitments.  And my inventory is very low - one of these days I need to work on getting more stuff woven!

To which end - this warp is doing a dual purpose - sample #2 for AGY:L&H (and a little cotton) plus some more lighter weight tea towels.  I have quite a few of the heavier ones made from 2/8 cotton and cotton slub (although colours are limited - I really should get a better colour selection made - more yarn needing to be purchased!) but am running low on the lighter weight ones.

This warp is 2/16 cotton and the weft will be 2/8 cotton/hemp - blended like cottolin but with hemp instead.  It looks rather like cottolin, and I will have to keep the two yarns well separated on my shelves so that they don't get confused.

I have also chosen a colour palette for the warp for some tops, which will also be a sample for AGY:L&H.

I am getting quite enthused about having some handwoven garments I can wear to conferences and things.  Whether or not I can actually get them made for this year?  Well, like I've said previously, I really don't have any time to waste so I'd better find a fistful of round tuits very soon!

Random on a Wednesday

Why is it so hard to wait for word on a creative project tossed out into the arena of possibility?  Perhaps that is what that much vaunted virtue of patience is all about?

Waiting for 4 different projects/applications to come to fruition...or die on the vine.  Impatiently.  Those that I am in control of seem manageable, but waiting for other principals to say nay or yay is vexing.  Although I'm getting better at it.  Perhaps I am learning patience after all?

There needs to be a different word than 'survivor', which assumes that cancer has been vanquished entirely, or 'warrior' which, to me, supposes an active battle.  What do people like me call ourselves when we are in remission but with the expectation that, at any moment, the big "C" can come creeping back into our lives?

The news at the clinic today was good - no current signs.  Yay!  But always, in the back of my mind, is the knowledge that time is limited and that if I have any goals in this life I need to work on them now, not some nebulous day in the future, because who knows when it will seep back into my body....

Perhaps the word 'patient' is most applicable in this case?

Why does the price of gasoline rocket skywards (up 17 cents per litre over 3 days) but come down oh, so gradually?  Usually right before I'm to make a long road trip?  I hope we are not headed towards $2/litre or more, although that is what they are paying in Europe.  Which probably means that the prices over there are going to go up, too - right before my planned extensive road trip from Sweden to the UK (including Scotland) and back to Sweden.  Sigh.  (And yes, part of that trip will be by ferry - there is no road from Sweden to the UK.)

Why are there so many books but my fav authors write so slowly?  Of course I'd be disappointed in them if they wrote faster and with less care....  Came home with half a dozen books from the library and put nearly a dozen more on my request list today.  You'd almost think I had time to spare for reading?

Why do I need to buy more yarn when I've already got yarn surplus to requirements?  Why is what I have never what I want/need when I want/need it?

My name is Laura and I'm a yarnaholic....

Two More

Today I had the sixth of eight Rituximab treatments, in the new cancer clinic facility.  I brought a small hanging that I hope will help brighten the treatment room up as, being brand new, it is still a little sterile in terms of atmosphere.  I suggested it would look best hung in front of a window and the nurse said she would bring a suction cup 'sky hook' from home to put it up.  If I can find a photo I will post, but I will have to dig deep into the bowels of my photo library.  Or take a photo of it in situ at a later date.

My veins were not co-operating today and they finally got the iv into a vein right where the wrist bends.  Which would have been ok except it won't stop bleeding.  Therefore throwing a shuttle or doing much at all with my left hand seems like a bad idea.  :(

The good news is that the oncologist said yesterday that they expect me to be around for a good long time to come and urged me to continue to monitor and deal with the hypertension, which is still an issue.

I told him that I expect to be around for a good long time, too.  :)

Now if I can figure out the bp stuff and lose some weight I will be a very happy camper!

October 29, 2012

the view from my kitchen window at noon....

We missed the local excitement Saturday night as we were still on our way home from Seattle.  The 7. something earthquake off the west coast of the Queen Charlotte Islands (Haida Gwai) was felt here in some places but no damage resulted.  We did run into the snowfall, though, and drove the last two hours home in the blowing snow, in the dark.  Which sort of cemented my inclination to stop going to do the Seattle Guild sale the end of October.  I've driven home just way too many times in similar conditions.  So for the time being, I'm thinking that this year has been my last at that show.

No substantive weaving info in this post - just a lot of rambling thoughts about life and living.  Nothing like a long drive to let thoughts chase themselves around in the back of the mind, examining various and sundry aspects of what is happening, what one would like, what one is actually dealing with on a day to day basis.

I have made no secret that I am dealing with a number of chronic health issues.  Many readers have thanked me for sharing my journey in this regard.  What I have really learned in the past four and a half years is that everyone - and I do mean everyone - is dealing with sh*t (pardon, but there is just no other word for it!)

No matter what I have going on, someone someplace is dealing with much worse.  This blog is just one way I can vent about my sh*t rather than burdening my husband with my frustrations because he's got his own sh*t and feels helpless about mine.  But let's face it, a gal has to vent occasionally!)

One of the things that happens when you have a lifestyle disease is that people assume that your lifestyle has contributed to the development of said condition.  It has been enormously frustrating to me to be confronted with this attitude when, upon sober reflection, each 'disease' has arisen in spite of my lifestyle.

Time after time I have gone through the questionnaires, done the reading, searching for why I have these things when I have been doing it 'right' - or as right as I can.  Face it, no one is that smart or strong!

So exactly what is my list of problems?

First and foremost, allergies.  Born with them, developed more as time went by.  My food allergies are in fact allergies - they are not 'just' sensitivities.  How do I know?  Had the tests.  When I consume an allergen the Ige response is initiated and the result is an immune system on high alert, a flood of histamines and an increase in inflammation.  (There are other responses that go beyond this but that is likely Too Much Information!) This inflammation can occur anywhere, often in muscles that are injured but also in my arteries, including my heart arteries.  This has exacerbated the genetic coronary artery disease prevalent in my family and from which my brother died at the tender age of 51 with a low level of cholesterol in his blood and no obvious signs of heart disease otherwise.

As a result of adverse drug reactions I now have hyper-tension (high blood pressure) made worse by my allergies.

As a result of the hyper alert immune system I have non-Hodgekin's lymphoma - a rather rare type (Small B Cell) which develops in people who have had continuous assaults on their immune system.

As a result of my allergies I have had chronic nutritional deficiencies which have led to other issues from time to time.

As a result of my allergies and nutritional deficiencies I now have osteopenia - a warning sign of encroaching osteoporosis.

All of these conditions are pretty much affected by lifestyle and as I looked over the list of recommendations each time a diagnosis came down the chute, I checked off most of them - healthy diet, check, active life, check, weight bearing exercise, check, non-smoking, check, non-drinking, check, etc., etc., etc.

So why the heck do I have to deal with all of this????  (Unfair!  Unfair!)

I got quite depressed in September when the osteoporosis was rearing it's head.  If I was doing everything right, then WHY?

Fact is, if I hadn't been doing everything right, I simply would not be here, now.  I would likely have died a few years ago and that is just about as simple and straight forward as it gets.  Because I have lived a 'healthy' lifestyle, these conditions were held at bay.  My healthy lifestyle has quite simply prolonged my life so that I am still here, still active, still able to do most of what I would like to do, and will probably be able to continue to do these things for a few more years.

How many more?  Well none of us has the answer to that!  Once again I bump up against the reality that life is short and precious.  We do not have time to waste feeling sorry for ourselves.  We can only do the very best that we can, each and every day.

"When you are going through hell...keep going"  Winston Churchill

Currently reading Heaven is High by Kate Wilhelm.  I picked up the last of the series currently available (a new Barbara Holloway novel is due out in December of this year) and will soon be up to date.  I've enjoyed Wilhelm's books so much that I will likely start reading her other mystery series.  I read the first one when it came out many moons ago so will likely begin with that one as a refresher, then track down the rest.

Taking Control

remember these?  All gone except for one...

Yesterday I got all the inventory unpacked and put away and was able to see what is low and what needs to be replaced.  It was very satisfying to note that only one of these scarves were left.  A nice stash busting warp and some good income as a result.  Win-win!

With the last of the craft fairs done and my cold just about gone it is time to start thinking about the future.  With the decision to go ahead with the next sample set my coming days will have a certain amount of structure as I work on planning the projects, ordering the yarn and beginning to generate the text and samples.

But I am also highly aware of the fact that my next treatment is coming up and I decided to take my life into my own hands to a much greater degree.  If I had to stop taking most of my nutritional supplements during chemo because they would interfere with the treatment by protecting the cells (yes, even the cancer cells) then obviously taking the supplements must be A Good Thing.

So I booked an appointment with a naturopath who specializes in helping cancer patients with the goal of doubling my remission if I possibly can.  I do not want to go through chemo again any time soon so the obvious thing to do is to make sure that I am living as healthy and protected a life as I possibly can.  

I picked up a rather lengthy questionnaire and filled it out - now to make lists of all my allergies and nutritional supplement/Rx meds and next Tuesday I'll go find out if what I'm taking is sufficient or if there are gaps that need to be filled. 

Currently reading Death of a Lesser Man by Thomas Rendell Curran

Thanksgiving Day

In Canada we celebrate a day of thanksgiving in October.  It's a great way to remind ourselves, whatever our religious beliefs may or may not include, that life is good no matter how challenging it may be.

In the course of the past 4 and some years I have learned many lessons.  I've always been the type of person to look for the silver lining in any clouds that may gather over my life but now I have really learned to stay in the present moment.  Because ultimately that is all we have.

I doubt that being goal oriented is going to change but somehow those goals have changed into more of a lodestone - a direction to which I am tending, not the imperative that they used to be.

I have also learned to choose my battles much more carefully.  When energy has been lacking it became much easier to see what things needed to be fought for and which could be left to slide away uncontested.

Ultimately the thing that I am most grateful for during this particular Thanksgiving Day is that I am remission - much sooner than I expected.  That I did not have to go through the entire course of 8 treatments and that I am in much better shape than I had any expection of being by this milestone.  Yes, energy is still low, but generally every day is a little bit better.  Most noticable improvement?  I am sleeping 'properly' for the first time in years and years.  What I had attributed to menopause appears to have been due to the lymphoma.  I am no longer bone weary with fatigue even though I still don't have much stamina.  But I am hopeful that as the chemo clears my system that that will return.

I am also grateful that my mother is finally moving into an apartment.  The timing could have been better, but it looks like she will be into the apartment before her surgery and winter.  Then all we have to deal with is selling her house - not something easily done in this town during the winter months.  But step by step we will deal with it.

And I am enormously grateful for the friends I have.  Walt Whitman wrote in "I Sing the Body Electric"

I have perceiv'd that to be with
     those I like is enough,
To stop in company with the rest
     at evening is enough,
To be surrounded by beautiful, curious, breathing
     laughing flesh is enough.

Happy (Canadian) Thanksgiving to all.

Another worsted wool that would not full - surprise!  Darlene lined it with a brightly coloured lining and again knitted an edge trim to bind the edges.

Currently reading Heat Rises by "Richard Castle".  I don't know who is ghost writing these books, but I love the Castle tv series.  Great dialogue, human characters, little references to Firefly if you are paying attention.  BTW, if you've never seen Firefly and like a great space cowboy romp, I highly recommend Josh Weedon's series (with a much younger Nathan Fillion).

No Reservations

My oncologist turned into Santa Claus.  When I got to the clinic it was to the news that today was the first treatment of the maintenance protocol.

Hooray!

There are no adverse effects from the monoclonal anti-bodies.  :D

I will get a treatment every 3 months for the next 2 years, but the really rocky part of this journey is over - for now.

Many thanks for all the good wishes and positive thoughts.  I have no doubt they helped!

Next challenge - getting mom through her surgery recovery........

Happy Dancing (with some reservations)

Happy Dancing!

I am doing the Happy Dance - with a little caution, since I do not yet have all the answers I was looking to get today at the clinic.

The oncologist pronouced my response to treatment as 'excellent'.  He is following up with the BC Cancer Agency today to find out if they will allow the maintenance protocol as a continuation of my treatment.

The prospect of remission increases from two years to six with the maintenance protocol.  He is hoping to have a positive answer by the time I go in to the clinic tomorrow.

Send all positive thoughts to the BCCA!  You can bet I'll be thinking hard at them all day today while I do my happy dance.

And enjoy the video clip.  We all need a little happy dancing in our lives.  :)

Fox Fibre Towels

green weft begun with small sample showing developed colour

I have totally lost count of how many brown towels I wove but one cone is now empty.  :)  This afternoon I switched to the green which doesn't look like much on the loom, but once the colour developes should look really nice.

My energy finally came back around Friday and I've been managing to weave without too much difficulty.  On Sunday I even managed to weave four towels instead of the two I'd been doing previously, so that felt really good - for a number of reasons.

On Saturday I attended a seminar on chemotherapy and the presenters emphasized that it is really important to get exercise if you can.  Their recommendation was to walk but if I'm going to exercise, I'll weave, thank you.  :)

Since my mood Sunday was pretty bleak, weaving was exactly the right thing to do.  For me weaving is an aerobic activity and the production of endorphins helps elevate mood.  Plus seeing 4 yards more roll  up on the beam was a great mood elevator all by itself.  Exercise also helps reduce blood pressure and mine has been higher than it should be the last few days.  Not sure if the jabs have been spiking it or if it is just the stress of the chemotherapy itself.  Whatever the reason, I am very anxious to complete the treatments so that my body can find equilibrium.

I am done the jabs for this cycle and tomorrow I hope to get some answers i.e. progress report based on the CT scan I had 10 days ago, whether or not I'll be getting the maintenance protocol (if he's got an answer yet) and if the jabs worked so that I can have #7 on Wed.

I have also gotten some contingency plans in place in case I can't weave on the AVL - placemats on the Fanny and a possible warp for the rigid heddle loom.

If nothing else there are still several buckets of shawls to be fringe twisted or knotted, loads of books thanks to a friend who passed several bags full of paperbacks on to me, jigsaw puzzles and naps.

I sort of feel like a marathon runner - I'm 3/4's the way through and the 'wall' is looming.  But like they said at the seminar, the only way out is through.  In other words:

  Thank you Mr. Churchill.

Currently reading Grey by Jon Armstrong

Sunny Sunday

Silk scarves after pressing

Managed to get the pressing done today - 8 silk scarves (whoops, really lost count!), 7 silk gimp shawls, 2 larger shawls and a small rectangle that may become a baby 'blankie'.

This afternoon I met with a lace making friend and we both talked lots and made (a very little) lace.  We're both having some issues with numbness in our hands - different reasons, same affect - so mostly the afternoon was about catching up since our last visit.

Once I got home I ruminated on the next warp some more, decided that the blue really would not fit nicely into the cloth I was seeing in my mind's eye, then realized there was much less of the pale grey than I thought I had and removed that, too.  So the next warp is a mixed blend of the pale and medium sort of beige colours and the sage green.  The warp is mostly the palest beige with the sage green as the least amount.

The weft on these tea towels will be the two darkest of the Fox Fibre colours - 100% green and 100% brown.  The blended colours of the Fox Fibre yarns darkened much more than anticipated so I'm expecting the 100% colours to get even darker yet, relying on the contrast in values to pop the fancy twill up as the design element. 

Since I haven't actually done a sample, I am fully into the 'full sized sample' club on this warp!

But now it's time to go to my friend's across the street for a tutorial on how to give myself the jabs to stimulate white cell growth.  Another milestone on this journey.  :)

Currently reading Wheel of Fate by Kate Sedley