“If you are falling….dive.”

Great qoute by Joseph Campbell.

 

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This summer has been all about healing my head – both mentally and physically.  I have Spontaneous Intracranial Hypotension from a CSF leak (cerebrospinal fluid) in my cervical / thoracic area.  We don’t know how I got this.  I have a theory but no one will acknowledge it except the loose-lipped neurosurgeon resident who may have spoke a bit too freely when he said (and this is my theory) the radioactive iodine treatment I had for my thyroid cancer may have weakened the dura and caused the leak.  Open exploratory brain surgery seems to be the course of treatment for this very rare condition.  I would like to avoid this.

The headaches are not as severe or constant as they were in the spring – this is due in large part to completely pulling out from my life as I knew it.  This was a very difficult thing to do – but as soon as I did it, I felt better.  Even though I had morphed into the armchair trainer slowly over the course of the last year (even lying on the floor during client sessions to deal with the pain), I guess the consistent early hours, lugging the equipment and random demo were doing me in slowly but surely.  I stopped, the headaches stopped.  I was warned they would return if / when I went back to the things I did before.

So what to do with all this time?  This question had me on the edge of my seat (and my sanity) so I sought some guidance to sort out my anger, frustration, expectations and here’s the jist of what I’m really responding to right now:

Always say “yes” to the present moment. What could be more futile, more insane, than to create inner resistance to what already is? what could be more insane than to oppose life itself, which is now and always now? Surrender to what is. Say “yes” to life — and see how life suddenly starts working for you rather than against you.” Eckhart Tolle

I have been resisting everything that has happened to me this past year and I keep getting thrown on my back.  I was encouraged to ask myself WHY?  I had unrealistic expectations of myself , I was beating myself for not being where I was a year ago, not being where I wanted to be and I was not just accepting “the now” and that really is the quickest way to crazy!

So what am I doing with myself?  I’m doing those things that I pushed way back in my to do pile – the things that were so looming they overshadowed everything and I was just getting used to living in the shadow of them in a really passive aggressive way.  Something as simple as getting a handyman in the house to do all the things that need to be done – accepting that neither myself or my husband were going to address them anytime soon – has expanded my mental outlook by 100%.  13 things are getting crossed off my list this week – they have been on that list for at least a year and I didn’t have to do them! DEEP. BREATH. AHH.

I canceled my kettlebell recertification (for the 2nd time), put all my equipment and training stuff away. I set expectations with my clients that I wasn’t coming back anytime soon if at all.  I am researching other careers in health and wellness where I can actually use my myriad of skills, putting together a game plan, I am getting ready to launch – all from my couch and very, very slowly…no pressure.

There is a big difference between “living with it” and “healing” – living with it is happily going hog wild one day and being bedridden with headache the next.  I’ve been playing around with “living with it” this summer and the see-saw was not working for me.  Healing is truly stopping everything and letting the body heal. It is an incredibly difficult thing to do.  What is left when you strip away the plans, goals, habits and routines – you.  Sitting with yourself and your thoughts with nothing to distract you is an incredibly intense and uncomfortable thing – the most awkward social situation situation x 10.  Loving yourself enough not to use that uncomfortable silence to berate yourself and others, feel inadequate and useless is not an easy thing.  I realize now I was so abuzz with expectations and so angry about everything that was happening – a big hand came down, bitch slapped me and knocked me on my ass and I was forced to listen this time.  The sound is silence – and that’s OK .  The thoughts come and I let them keep on flowing by and just focus on the breath – and there is my power.  Each day this becomes more and more clear.   This is true progress.

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Like a Hole in the Head… I need this?!

IMG_5924Tonight Ava took her Lion to the local first aid squad for their animal hospital night.  Leo had a busted up head, just like Momma.  I’m so glad I can inspire Ava’s creative play with my medical issues!

The headache mystery has been diagnosed after an MRI yesterday!  Intracranial Hypotension.  My brain does not have enough spinal fluid – I’ve sprung a leak- they need to find the leak and seal it. .

So after a month of headaches, I’m going to get some resolution at last! Of course that comes at the price of an invasive procedure and probably some (more) immune system -killing drugs.  It seems like I’ll get a spinal tap (I’m going to try to avoid that) – they will confirm the MRI diagnosis and then I’ll have a blood patch done – which is essentially and epidural of your own blood.  Weird.  In the meantime- I’m supposed to drink / take a lot of caffeine and lie down as much as possible – those two really go together, don’t they?

photoMy brain is sinking (really) and I am getting dumber by the day – seriously, I can’t dial a phone number right the first time.  Look at this call log – me trying to make an appt with a neurologist.  Wild, right?  It was like I’d never dialed phone.  This has been happening the last two days…

And how the hell did I start leaking spinal fluid, anyway?!  This is so bizarre.  But fine, “whatever!” as my 5 year-old has started saying (a few years too early in my opinion!).

 

 

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Can I get one now? Please?!

Gimme a break

I just have to say this out loud but can’t – so I’ll let Nell sing it… –http://www.youtube.com/watch?v=BjToSufqRsE

It’s been a while since I’ve posted anything about what is going on. I had some good news in April – my TG went down to 7.5 from 12.5 (which means the radiation is still working on whatever is in there) and the 2 nodes that are lighting up in chest and lung are too small to do anything about.  This is good news since it means I have a few months to myself but bad news since it means there are just more procedures on the near horizon. I’ve accepted I have spread-y thyroid cancer and I will not be one of the “one and done” success stories. A part of me was hoping I could get these nodes biopsied, sliced and diced ASAP so I could know what is ahead of me and get it over with. Oh well – I’m trying to make lemonade here – so I view it as an open season for me – you know this elated little “go me” period I’ve referred to frequently over the last 12 months that has never really happened.

I received that news on a Wednesday and woke the next Saturday with a really bad headache. One month , two emergency room visits, 3 doctor visits, one 5-day course of steroids, 2 weeks of physical therapy to rule out a pinched nerve in my neck, chiropractor visits, massage, and 4 weeks on many different pain killers (none of which help)– I still have the headache.  3 whole days of optimism this time!  Moving on up!

OK – so this is starting to sound a little hypochondriac-y dramatic, right? I’ve noticed a thread of hypochondriac-like behavior on the cancer boards and I have been very careful not to consider everything that happens to me a direct result of all the stuff I’ve been through the last year – but really, it is insane how sickly I have become and how far that is from who I was at this time last year – on all fronts – but I refer now specifically to my health.

Before this thyroid stuff started, I was not a sickly person. I never went to the doctor, only took antibiotics when absolutely necessary and avoided medications, particularly OTC stuff for aches and pains.  I don’t even take my daughter to the Dr when she is sick because in general I think the cure is worse than the disease. (I also thought when people said they had a thyroid problem they really had an eating problem and people that had headaches were wusses…)

Right now, I am being held hostage by my desire to feel normal and find myself doing whatever anyone in a white coat tells me. After each of my two surgeries in the fall, I had huge doses of antibiotics and then I was given radioactive iodine to ablate the remaining thyroid tissue and cancerous cells. Yes, my TG is going down as the RAI killing off all sorts of evil – it is also killing off all sorts of good. They say RAI is safer because only thyroid cells pick up the poison – but I had an aggressive spread from a very tiny nodule and this means it is going all over and this stuff is ruining my immune system. This is affecting my life in more ways than I could have imagined – but I can’t complain, write or discuss it lately because I have a headache.

I was put on prednisone for a week – the headaches went away – what does that mean? I had inflammation, the steroid SUPPRESSED my immune system (even more) and the headache went away because my body’s natural response was turned off. I don’t need steroids right now but I want those steroids!! A week later – I got pink eye and a sore throat (pink eye seems to be my new black). I was told it looked like beginning of sinus infection – was given the drops, 2 allergy meds and a 7 day dose of antibiotics. I held up my hands and said, “WHOA. I have a compromised immune system – you just handed me a menagerie of medicine like a handful of darts. I can’t play around here.” So I was given a timetable – drops for 3 days, if that doesn’t work – start allergy meds, if that doesn’t work take the antibiotics. Sick of being sick – I lasted about 2 days with the revised plan and went right for the antibiotics My eye is still pink, I still have the headache. Now what?

Tomorrow I start training for the SFG kettlebell certification (the second time I’ve registered for it – this one I have every intention of attending!)- I’m investing a lot of money and hope into training with one of the best. I’ve made the decision to do online sessions since I don’t want to be in a gym environment and expose myself to more sickness. I’m like the boy in the bubble lately and I’m not feeling all that strong so this is going to be a challenge for me.  Yes, I’m saying it out loud.  I don’t feel strong and I’m pretty fed up.

I’m probably getting an MRI this week to look closer at my head – I don’t want to know what’s going on there but I have to know what’s going on. I don’t want them to find anything, but I want them to find something.  I don’t want to take the medicine but I want to feel well.  This is where I’m at.

Onward ho!

 

 

 

 

 

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Seek and Ye Shall Find…

So I’ve been sent for a scurry of tests in the last couple months to get a better look at the chest lymph node that has been showing up as well as to see if there is anything else going on that could warrant my high thyroglobin (TG) level.  My new Endo confirmed that I was sent for these tests too soon after my radiation and I should have waited until May to do all this poking around…I am thoroughly convinced that if any of us had the type of scans I’ve had in the last two months SOMETHING of concern would be found.  Seek and ye shall find!

me

Look at all that activity in my brain! Busy Busy Busy!!!

What they found:

  • 6mm pretracheal lymph node lit up in upper chest – too small to biopsy so have to wait and watch.  This is the one that they were concerned about.
  • A new player: 3mm lymph node in my lung – can’t do anything but watch it.
  • TG level is 15.5 as of end of February – it should be 0
  • Neck seems clear (good news!!) as of CT Scan done in early April

Plan of Action:

  • Hoping next week’s blood work will reveal a downward trend in TG which would mean RAI (radioactive iodine) is still working on thyroid tissue remnants and any existing thyroid cancer
  • CT Scan in 4 months to track the 2 nodes in chest to see if they are active
  • Will do annual WBS (whole body scan) with a low dose of radioactive iodine in December (this is standard for Thyroid cancer – thyca – patients) – this will decide if I need another dose of RAI ablation

How I’m doing:

  • Really happy to have an open season ahead of me!  Spring and Summer is mine for the taking!
  • A little freaked that these two nodes (or at least the one in the lung) may NOT be thyca and may grow in the next 4 months but I’m not going to think about it…
  • Getting back into my routine after almost a year of chaos and uncertainty.  The uncertainty is still there – but it has become easier to accept the inconvenience of not really knowing what is going on and knowing too much at the same time…
  • Overall – Well!
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It ain’t over…but I’m cool!

The PET/CT scan showed a left upper mediastinal lymph node – basically a cancerous node in my chest. The good news is that when I had the whole body scan after my RAI, it lit up – meaning it took up the iodine which means it could still be working on obliterating itself over the next few months. The bad news is that it is considered a distant metastasis and it is in a tricky spot “between left subclavian artery and left common carotid artery just above the arch of the aorta” – so surgery – if it comes to that – would be a bitch. My doctors are referring me to a thyroid wiz at University of Pennsylvania to decide next steps.  In the meantime I’m happy to wait a few months for an appointment with this new doctor and new blood-work to see if the TG (thyroglobulin) level goes down (which would mean the radiation is working on the node).

I’m cool because it seems I have some time before anything else needs to be done – I just want some peace to focus on some me things like my business, my health and some educational pursuits…this has been non-stop clinical thyroid hell since the fall and I am really looking forward to enjoying the spring and all it represents!!!

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