So, this thing happened....

Quite literally, while I was being prepped for my first chemotherapy treatment, promoters for what remains of the Grateful Dead announced a one time only series of three shows at Soldier Field in Chicago called Fare Thee Well....the final performances by the "core four."

I immediately wrote it off...it's in July, in Chicago, during my first year of fighting cancer.  

I groaned at the news, and I just assumed it would be impossible.  

Who knows how I will be feeling by then?  What kind of bills will we have?  Will I be able to work to PAY those bills?

It wasn't something I thought would happen.

Others did not agree.

One friend started a fund raiser via Go Fund Me.  That's the site I used to raise money last summer for my friend in Illinois who has stage 4 cancer (how ironic), and is homeless.

So the idea was to raise enough money for us to be able to 1) get tickets, 2) get a hotel, and 3) get a car or limo.

And it happened.  TONS of people donated, shared the link, and spread the word.

There's a lot more to the story, but that's enough to tell right now, because I can't stop crying.  

Because of the efforts of friends and family, we got three tickets.  

One for me, one for Dave , and  one for my brother, Cole.

Cole took me to my first Grateful Dead show when I was 16, and he was the one who made me listen to their records when I was 8.

So this is his fault, really.  I need to pay him back by seeing that he is at the last - ever show.

And we will be there.  All three of us. 

Ears

The weather forecast says we are in for another round of winter weather.  My head gets really cold without any hair on it to speak of, and I've been joking that I wanted a hat with ears.

When I found this one, I realized it wasn't really a joke, that I really DID want one, so here it is.  I hope it's cold on Monday, so that I can wear it all day at work. AND yes, I WILL.

As you can see, I am making the best of the situation.  It's what I do.

Things are good.

I am having a bit more fatigue just lately: the kind that feels like a head ache, but isn't really a head ache. Does that make any sense?  You know how sometimes you just feel so tired that your head sort of hurts?

But really, all in all,  I'm doing fine.  Even when I feel that level of fatigue, and I try to rest, I don't really nap or fall asleep. I just rest a bit, and feel better.

Like today, for example.  We got up and going pretty early, and went out and did all of our grocery shopping and errands this morning.

We came back home, had lunch, and Dave went to see his dad.  I was feeling a bit fatigued after Dave left, so I lay down for a while to finish the book I was reading.

I read, and rested on the couch until Dave got home, and then we went out again and did a few more errands, and I felt normal again.

Dave was out of town this past week, though, and I slept badly while he was gone.  Then last night, I had leg cramps and didn't sleep well again, so I am thinking that all of the sleep interruptions over the past week may be why I had the bouts of fatigue.  Not sure, but it feels right.  We'll see how the next couple of days go, provided I sleep well tonight.

For the most part, though, I have been sleeping really well in general, and eating well, during this process.

My sense of taste and the way my mouth feels returned to normal almost exactly at the 10 day point, and since then, I have had no appetite problems, and my weight has returned to where it was before diagnosis.

Other than the fatigue, I've been really congested, and my poor nose has been bleeding from all of the blowing and wiping.  The tissue can't heal as quickly as normal, so the bleeding has been a bit troublesome.

However, during the "chemo mouth" phase, I re-introduced certain comfort foods back into my diet that have not been a part of it for YEARS....foods that cause me to be congested.

So, duh.  Time to take them back OUT of my diet, since I don't need to entice myself to eat for the moment.

But it sure has been fun to be eating grilled cheese sandwiches, and other dairy and grain based foods!!  Yum.

And one last thing is that my ear piercings have become intolerant to almost all metals (I believe I mentioned that in a previous post or two).  Even the stainless steel earrings Dave got me to try as Valentine's gifts turned out to be irritating.

The piercings became infected and painful, and it's really aggravating because I WANT to wear earrings now that my ears show all the time.

Anyway, I've gotten three of the holes healed by soaking my ear lobes in hydrogen peroxide, and putting antibiotic ointment on earring posts and putting them through the holes in order to apply the ointment inside the piercings.

One piercing, however (one of the ones my mom let me get when I turned 16) seems to have closed up entirely.  I can't get anything through it.  So that one may have to be re-done after this is all over.
We shall see.

A friend has suggested titanium earrings.  Unfortunately, I don't have any, and my vast collection of jewelry is mostly silver, gold, and "cheap,"  all of which cause a reaction at the moment.  It stinks.

So.  Next week, I receive round #3 of chemotherapy on Thursday.  

REALLY hoping I continue to do well, since I have to go to work the day after.  Not sure why they switched me to a Thursday, but I for sure prefer Friday, and will ask for it for #4.

Meantime, hoping that the winter storm they've predicted doesn't cause too much of a mess. Everyone stay warm out there, and have a good weekend!

Sunday update....

Well, this round of chemotherapy has been even easier.  I had no diarrhea, and that "weird feeling in my body" only lasted the first night.

I slept better the first night than I did last time, too....Last time, I was pretty much up all night the first night, but that was probably mostly anxiety.

That strange paleness came and went like the first time. SO odd.

I'm also having some bleeding from my nose, but it's not a lot, it's just surface bleeding from the delicate tissue in my nostrils being irritated because of the high level of allergens in the air around here.  I am always blowing my nose, and taking decongestants, and the inside of my nose gets irritated, and can't heal properly right now.

The only thing that has been more pronounced this time is the mouth issues.  The losing of the sense of taste started right away, instead of waiting until the following day or two.

But using a dry mouth remedy mouth wash was recommended, and I cleared that with my doctor.
That seems to help a bit, as well as the rinse I make with baking soda and salt.

No mouth sores, just the inside of my mouth feeling kind of "rough," and the poor taste sense.  And as of today, 9 days in, it's all going back to normal.

In this process, I have noticed that sweets are the only thing that taste normal, so I have allowed myself to indulge a bit.  That kind of thing is not usually part of my diet at all.  People bring donuts to work, and I shun them...but right now?  Not so much.

That won't be a permanent change, because I know that foods like that cause inflammation, and I will go back to my health food queen ways when healthy food tastes good again, which will be in the next day or two.

I have to admit, though, it's been kind of fun to "eat like an American" for a few days!

My hair has thinned to the point where I can no longer go out in public without something on my head.  What's left of my hair is limp, and wispy.  It's very, very sad.

If there's one thing I NEVER thought I would look like, it's a little, old man.  And I still have my boobs...what happens when those go away?

Sigh.

I've mastered the art of wrapping large, oblong scarves into cute turbans, and the girls at work chipped in and bought me some pretty pre-tied (with elastic) scarves.  The elastic on those is uncomfortable, though, and I have to wear them above my ears, or they HURT!  I wear them, though, because of what they mean.

Dave and I had our Valentine's Day date on Friday in order to avoid the Saturday night crowds.  I wore my free wig from the American Cancer Society for our date.

The funny thing was, my level of "self consciousness" was higher in a wig than it has been in a scarf or cap.  I think that's because, on some level, the wig is "fake."

It's a lie....

A scarf/turban says "Yeah, so I am bald, be glad I'm covering it up so you don't have to see it."

A wig says "I am trying to fake you out...."

Make sense??  It's not authentic (see my post from last spring about living my authenticity).

But, Dave said it looked pretty good, and, on some level, it was nice to go out and feel that I looked more "normal."

When I go out in scarves and hats, I've noticed that people actually LOOK at me. With the wig, I was invisible again.

It's probably just me noticing that they're looking at me, with the scarves.... which I never noticed before. It's coming from inside me, not from anyone else. But it's still a different perspective.

Anyway....be that as it may....

Tomorrow, I have my "mid-cycle" labs.  10 days after infusion, they want to draw blood to check my CBC for any abnormalities.

When I saw the doctor before treatment #2 he said my blood work was VERY good at the mid cycle and end of round #1.

He also said that I am making this process easy for everyone concerned.

I guess THAT is where my overall insanely good health is coming into play.

I keep being mystified about how someone can live like I have-- with a TOTAL focus on wellness, nutrition, fitness, and health for her WHOLE LIFE, only to get a stage 4 diagnosis out of the clear blue sky, right when everything in her life seemed to be lining up and going right.

Anyone who knows me has to admit that my life has been all about health.  Period.

But, maybe this journey is the reason....maybe this is WHY I was drawn to and started studying herbal medicine, and healthy eating, and the whole natural health lifestyle, at the age of 17.

Let's hope it's so that I could be my doctor's miracle, and my own miracle.

Let's hope this process continues to go well, and that my overall good health prevails.

Because, for fuck's sake, I've got too much left to do, don't you know.

Round #2

Other than the nurse in training who could not get my IV in yesterday, round #2 has been very uneventful so far.

I felt a bit funky last night, and had some trouble sleeping, but not near as much as with round #1, and I woke this morning feeling...dare I say it... practically normal.

Have laid low at home most of the day, but did take a chance and went out to browse an antique mall for about an hour.

Came home and took a nap.

Still feeling really good.

Round two is 2/6

Happy February.  Rabbit, rabbit, rabbit.

I say that on the first of the month every time I remember to, thanks to my dad doing that when I was little....and I am still waiting for all of that good luck that it's supposed to bring.  I figure there's a back log of about 40 years coming my way.

Things have been going well, over all.  I have felt pretty much normal, despite my period coming back, now that I am off of the medication that was stopping it for all those years.

Had a couple of days of fatigue, and felt sort of like I was getting a cold or something, but today is better.  I've been working out every day, and have had a normal appetite for a while now. It's good.

Last Monday, my hair started falling out.

By Friday, about half of it was gone. Not patchy or anything, just overall, massive thinning.  Huge quantities came out when I washed it Friday morning, so I asked my friend and hair dresser if she would cut it off for me.

I went Saturday morning and got it chopped short, thinking that would be less messy and easier to deal with as it continues to fall.   So far, it does seem to be a bit less ALL OVER the place, and easier to keep up with.

I am wearing a cap today to keep it out of my cooking projects.

Anyway, Daria braided what there was left of it, and wrapped it in ribbon before she cut it off.  Then, she hugged me and held me while I cried.

I also asked her to bag up what she swept from the floor.  SO MUCH of it has already gone out with the trash, but I have enough to do some kind of ritual/offering with it, thanks to her efforts.

I've gotten a couple of hats, and some scarves to get started.

A friend from my last job is coming by later with more, which belonged to her mom while she was going through chemotherapy, and a friend from the dance studio has alopecia unrelated to chemotherapy, and she is going to share some of her head coverings with me as well.

 Here's the short haircut

And an experiment with a silk scarf from a friend

Turban wrap technique I learned MANY years ago at the Ren. faire....apologies for the stupid, forced smile... LOL.... this is a sari scarf, about 6 feet long by 40 inches wide.

I should not have to worry about having to spend money keeping my bald pate hidden and warm.

That's good, because the bills have started to mount up.  Cancer diagnosis and treatment is a financial challenge, even with insurance, and especially at the beginning of a deductible period.

Sigh.

Anyway, it's Superbowl Sunday, which I don't really care about, but it DOES mean a batch of jambalaya is in process (even though the Superbowl isn't in New Orleans anymore).

Also made some sausage breakfast muffins for the week, and have one more dish to prepare for our lunches.  Good thing today is a good energy day, and that fatigue is gone!

Folks back home are dealing with the first real blizzard of the winter.  In a way, I am jealous.  I miss real winter.  Seriously. I do!!

The only aspects I don't miss much are the big open parking lot at the condo, and having to deal with ALL of the complications that brought when it snowed a lot;  and my 20 mile round trip commute could get pretty nasty in bad weather.  It could sometimes take me 2 hours to get from work to home.

But for the most part, I miss winter.

Anyway... have a good week, gentle reader.  My next treatment is Friday morning.  Please start praying/sending juju NOW.  Thanks.