MAC update

on Dec 29, 2016

I started this post just after December 4th, which marked one year on full dose MAC meds.  Today is December 28th and I think I’m feeling (just about) ready to actually launch it.

For those who are thinking, what the heck are MAC meds, MAC stands for Mycobacterium Avium complex.  This past year marks my second dance with this unwanted lung guest.  I have actually been culturing negatively, meaning, it hasn’t shown up on my labs,  since one year ago tomorrow- Dec 29th. However, because of the nature of this little bugger, current recommendations are to treat it aggressively for one year beyond the first clear culture.  That brings us to tomorrow.

Did I just write that, tomorrow?! Yes.  Tomorrow.

That said, it is my doctor’s recommendation to just finish up the remaining medication which would bring me out another 30 days before I finish.  That said, and because nothing is clear cut, my body has been on these drugs a long time. This last month has been particularly hard.  I may need treatment sooner than another 30 days for the part of CF lung and sinus disease that could not be treated while on the heavy MAC drug regimen.  Soooo, I’m not exactly sure when my end date will be yet, but both Rick and I are thinking it needs to be sooner rather than later.  And that brings us back to maybe it’s tomorrow.

My original thought was to let my body have a little rest after the intensity and duration of the MAC antibiotic regimen before starting a more aggressive pseudomonas treatment. (Pseudomonas is one of the other bugs that I so generously host with my CF lungs.)  But, as I said above, this past month has been hard.  My cough and overall CF flair up symptoms have gotten worse.  Because of that,  I might really need this treatment to stop as soon as possible so that I can quickly jump right into a more typical CF clean up effort.  This may mean a hospital stay and what we, in CF speak, refer to as a “tune-up”.  I’m still holding out for another possibility and for things to shift in a different direction with some other tools and oral antibiotics though so we’ll see.  I guess I will know tomorrow what tomorrow brings and then I will know about the day after that when it comes, and the day after that when it comes.

I can say that stepping up my sinus care regimen, after dealing with a month of daily painful sinus headaches, seems to have helped in that department and that part of me seems to be doing better. Hurray for that!

So back to the MAC. In a way, I can’t believe I am in past my year point.  It’s pretty amazing when I let myself feel into that.  I did it.  I’m ok.  It has not been easy and my body has had it’s ups and downs with this whole thing, but we did it.  I am at the end of this tunnel.  I can see the light and am in fact almost about to pop back out into it.  Wow.

In other ways this has felt like a very long haul and the time before treatment feels like a very long time ago.  The April of 2015 when this whole MAC business came back into the picture feels like a life time ago.  So much life has happened since then on a number of fronts.

As I write, I’m remembering all the questions around whether to even treat at all.  I’m remembering all the up and down and additional tests and wondering.  The wondering.  I remember wondering if my body could hold up to what was proposed as the required level of treatment for this round. I wondered what that would feel like. What I would be able to do?  I remember my first full dose of all three drugs and my optimistic goal of ending treatment six months from then which would have been June 4th, my birthday.  I’m remembering sitting in Dr. Shelley’s office and first really hearing, really hearing that a more realistic date was closer to December.  I remember deciding then that a count down to that time didn’t feel appropriate anymore.  I remember knowing that I just needed to be in this day by day and meet each one with the best of what I had.  I didn’t really want to think about when the end would be, it seemed too far.  I needed to let go of time around that for a little bit.  I don’t think I dared to pick it back up until after Thanksgiving this year.  The agreed upon end date by that point, baring nothing changing in my cultures, and I checked every culture like a mother bird checking her eggs, would be Dec 29th.  Although yes, there is talk of a little longer right now, somehow it matters less.  I’m fine.  I made it.  I have arrived.  I am nearing the end of MAC treatment.  I would like to leave feeling good and give myself a little break from antibiotics, and, it is what it is, I still made it, I am still close to ending this chapter.

I am ready to be done.  I know Rick is ready for me to be done.  My body feels ready to be done.

If I’m honest I also have a little fear.  What happens for my body when I stop?  Will the parts of my immune system that the drugs took over be able to rebound and do their job? How long will it take for my liver to re-regulate and my hormones to get back to normal and what will I go through as they do that? Will MAC come back? It may seem like a strange thing, but there’s kind of a safety net of being on these drugs.  One of them, azythro, seems to have an added boonus of helping me to not sink so easily when sick.  Also, as long as I’m on MAC treatment I’m “working my way through it”.  I’m already in.  This means that I don’t have to face what it feels like to have a new case of it.  This is a hard one to explain, but it’s similar to when I’m in the hospital or on IV antibiotics and I get that slightly invincible feeling of “these will do their job” and “they’ve got me”.  It’s like once I get over the initial, “I don’t want to do this” and I’m in, I relax a little into their power.  I give myself a permission slip to let go of taking care of whatever bug they are fighting and trust they will hold me, even if it might mean some extra body care.  Anyway, I will stop trying to explain that because I don’t know if you can really get that unless you do and if you do you probably already have.  Basically, I’m a little afraid of what happens when I stop.  Ultimately though, I think I can trust that which has brought me this far.

With this treatment coming to a close, I’ve taken a little time to do some reflecting.

A few of the questions that came up for me were, “Have I really honored my body in the way I had hoped to?”.  “Have I really cared for myself during this treatment?”  “Did I make room in my life and put my health first over this past year like I had intended?”

My answer is actually no.  Well, that’s probably not fair.  What feels closer to my truth is, not really.  I could have done better in regards to all three of those questions I think.

Now before you all (assuming anyone is actually reading this) say not to be so hard on myself and you’re sure I did my best blah, blah, blah (I say that in a way that’s less harsh than it reads).  My commitment is to be as honest as I know how, with myself and my readers.  My “no”, well, my “not really” feels like an honest reflection.

One place where I feel like I did honor my agreement was around my bodywork and health coaching practice.  I did let that take a back seat to my body needs in what feels like a mostly healthy way.  I am so very grateful to have had the support of Rick, my dear friend Cathy Woodside at Our Natural Essence Wellness Center, and the understanding of my clients as I did my best to do what I could when I could.  I can’t take total credit for setting boundaries around that in a proactive way though because part of that decision was based on the fact that my body was actually physically not able to do as much without feeling terrible while in MAC treatment. (I am hoping I will regain strength and vibrance and that my joints will feel better after I get off these meds.)  So, what I could do sort of dictated what I could do, but I did listen (sometimes better than others and after being knocked on my butt,  but if I didn’t listen before I listened then).

In some of the other areas of my life, not so much.

Granted, it’s not like there wasn’t a shit ton to deal with this past year.  There were some pretty significant family events and challenges that took priority. There were places where it felt like I was needed so I showed up, sometimes beyond what made healthy sense for me.

I also am someone who tends to take on responsibility for a lot.  I am a work in progress in the department LOL.  One of the gifts of being in this treatment was that it could have been a time to really practice letting go with a darn good excuse to do so.  I did a wee bit of that, mostly towards the end or at times of acute kidney damage showing up (I say half laughing, really Kori, that’s what it took?!).  It’s clear that I still could use some practice not taking on.  I think I will get better at it as I continue to develop trust and attention on Grace/Love/God.

There’s also something for me around wanting to live life in a “no excuses” kind of way and to do as much as I can with what I have.  So… it’s about balance I guess…

One of my commitments to myself at the start of this treatment, when I decided to go ahead and do it, was that I would make regular time to go deep within and tap into the wisdom and healing goodness that I have access to within myself, my connection to Grace.   I do not feel like I did this in the way that I had intended.  Again, I get it, it’s been a hard year, and…I do see where I put myself second (or third,  forth, or at the end of the list even) to whatever else felt like it needed to happen.  I see how that may not have been the most life giving or supportive choice for me at a time when I needed supportive choices.

I wish I had been a little more conscious of this during the duration of this treatment.

I think I kept thinking, I will slow down after I just get through this,  for each this that came along.  I did have the reality of daily treatments and daily sensations from those treatments in various forms that pointed to the need to take care of myself.  At some level I did, and reliably do, a very good job of this.  However, one of the places I really get stuck is when taking care of myself comes into conflict with not wanting to let others down in some way, imagined or real.  As I write it it seems like a weak reason to put care for my body as a priority on the back burner, but it’s amazing how very deep the roots of that reflex are.  As I reflect, I see that not wanting to be a disappointment or let someone I care about (and I care about a lot of people) down has been a powerful, many times unconscious controller in my world.  Reflecting on this time in particular, when self care was really important,  has shown me how much control that automatic response of “care for other first” has.   I can’t imagine consideration of another’s feelings, other’s welfare, or commitments I have made ever not being important to me. However, I don’t want that to totally run the show.  I don’t think the way that I have that wired inside myself makes sense for me anymore given that I also want to be a healthy, joyful, free being.

There’s also something around guilt.  I started to write about this, but I need some more time with it. There’s enough there for it’s own entry I’m sure.

I say all of these things without judgement, they just feel honest and I can understand them.  I do know, given the circumstances and where I was at, and my capacity at the time,  that I did my best.

I also must give myself some kuddos because I (whoever this “I” is) survived, not only survived, but did well overall with this whole regimen and it’s hurdles. This body has held its own through a year of A LOT.

I can also confidently say that even though this past month has been harder physically in some ways, I do feel like I have made significant “life progress” lately.  I have inquired within, during these last weeks and I have made time for meditation, and seeing what’s possible beyond what I felt possible before.  In that way I am going for it.  I feel more confident and hopeful that my report at this time next year, if I make one, will be full of good things.  

And I also don’t think I could have gotten to where I am with this had all the other cultivating not happened.  I guess the fruit ripens when it ripens and maybe that can’t be rushed.

So as I embark on the “post MAC” chapters of life, how will I continue?

What will my life look like?

It feels clear right now that it won’t be “life as usual”, out of necessity right away as I get the rest of myself cleaned up and “back on track”.  I hope though, that I can find it within myself to face those places where I know I can grow and become more free and go for it. I don’t necessarily want life as I knew it before this last MAC round anymore.  I’ve shifted from “wanting my life back” post MAC to instead wanting the new version of my life.  That feels good. It feels like it’s time to shift into life as great.  I don’t necessarily want my usual default of  “life as usual” filling the days back up beyond capacity that even having a demanding, intense treatment couldn’t cure me of.  I’d like to make a different choice, to prioritize what feels most life giving and important and fulfilling.

I feel excited about a few things.  Some of these things are, Booster Jots, a book project that I keep putting on the back burner, making my “life practice” a priority, and looking at places where I find joy.  I still enjoy working with individual clients using bodywork or doing health coaching.  I am good at it.  At the same time, I also want to make room for the places where I feel like I can offer the most on a bigger scale.  I don’t know exactly what that means or looks like yet.  I am waking up to that though and know that if I let myself open, without fear, that the perfect reflection of what I have to share will unfold.  So, we’ll see!

With love, gratitude, and consciousness ?.