Happy Birthday To Me – I Get Surgery Round 3

Last post on July 21^st ended with hopes of more blogging, return to treatment and yet another new “normal” in this journey with cancer.  Well August 2011 had other plans for me, and boy am I happy to say goodbye to summer 2011.

August recovery was going very well.   It definitely was taking me longer to get my energy back, but by the time I made the trip back to Ontario in mid August, about 4 weeks post the surgery on July 18^th, I had gotten back into some slow running and Yoga, as well as most days was not needing as many naps.  On August 18^th,  I had spent the morning enjoying a light 6 km run touring around my old neighbourhood at my parents place in Kitchener, came home and was making a quinoa chocolate cake when I experienced my first seizure.  Luckily my dad was right there when it happened, called an ambulance and off to the ER at Grand River Hospital I go.  After a cat scan, and based on my dad’s description, they assumed it was a grand mal seizure and I was placed on anti-convulsive medication that my team will likely keep me on indefinitely because I am now always at risk for seizures.  My license has been revoked, but I am now on new medication which allows me to drink in moderation.  Other than hitting my head on the counter and also spilling a big container of cocoa powder on me during the seizure (apparently I was the best smelling thing in the ER), the seizure itself didn’t do much damage.  However I have been told that a seizure is the equivalent of running a marathon, and considering I was still recovering from my surgery, the result was just compounded fatigue.

I returned back to Alberta early September, and energy still wasn’t coming up.  Additionally my blood pressure felt very low from my surgery and the seizure.  Any time I got my heart rate elevated I started to feel a little headache and my strength was way off.  Again though, surgery, seizure, body needs time to heal, so I just really backed off and took more breaks.     Weekend of September 10^th, the headaches started to get a little worse, but only to the point where I decided to start taking some advil.  Jared went away for an overnight conference and when he came back on Tuesday morning, he noticed a physical change in me.  The 14^th was my birthday and I was shooting a video with the Alberta Cancer Foundation.  As part of the video, we went to the Cancer Centre to shoot part of it with my oncologist in clinic.  Although not an appointment, he took one look at me and was concerned.  We discussed my pain levels and had a nurse take my blood pressure.  He gave me a script for some steroid to help with pain and told me to call if things progressed.

After the shoot, I had a chiro appointment which Jared took me to.  When my chiro saw me, he also inquired if I was all right, and I explained that I had a headache and though my blood pressure might be low.  He started with taking my blood pressure, which was 85/55 and alarmed him.  He laid me down, put a pin in my forehead to try and help with the headache and then went to the waiting room to chat with Jared.  They monitored my blood pressure for about 30 minutes and when it wouldn’t come up, Jared called my team at the hospital and my oncologist recommended blood work which we did that evening.

The night of the 14^th was a horrible night.  Despite taking the steroid, the headaches were unbearable and I spent most of the night asking Jared to “shoot me in the head” to help with the pain.  Early morning vomiting began around 2 am.  Before Jared went to work he coached me on calling my team and explaining that I didn’t just have headaches that I had “debilitating headaches that have progressed to vomiting.”  I called my team at 8:30 am and by 10 am they had returned my call and told me to come up to the hospital at 4 pm when they would have a bed for me.    I arrived promptly, was admitted but had no idea why or what to expect.  That evening they sent me for an MRI, where another cyst was discovered and I was meeting with my neuro-surgeons team again to discuss going back into surgery.

We opted to wait until Monday September 19^th for surgery, as my neuro-surgeon was not available until then.  Being that he has done the other 2, a couple extra days of waiting wasn’t a big deal, especially since I was in hospital and on drugs that were managing the pain.  Surgery was late  Monday night, I think it was the quickest yet only about 2 – 3 hours.  They drained the cyst and took out a little more margin around the spot.  Although we don’t have pathology back yet, I am unfortunately confident this is yet another recurrence because of the proximity of the cyst to the original cavity location.   The other thing that was happening is that the cyst was causing cerebrospinal fluid (CSF) to pool into the cavity and consequently the CSF couldn’t get out, ergo added pressure in the head, ergo headaches.  So I have new hardware in a Cerebral Shunt, which if this pooling were to happen again, my team now has the option to drain the excess fluid without potentially needing surgery.    I don’t totally understand how all these pieces (cyst, cavity, shunt, CSF) work together, but I don’t really need to.  I just need to know I have it, and that my team knows how to use it.  I am however just blown away at the technology and ingenuity in the treatment I have had the benefit of receiving this summer.

I was out of surgery on Monday September 19^th and discharged on Thursday September 22^nd.   Of the 3 surgeries, this recovery is the slowest.  My legs in particular because of the amount of time in bed, have been very sore and unsteady, but everyday seems to get a little better.  I am tapering of the steroid which causes challenges with sleep and just overall mental function so I am definitely tired but counting the days to Oct 10 when I am off.   As mentioned in July 21 post, the intention was to be starting chemo again this fall, which has been delayed again.   We have been offered a clinical trial, which we accepted and will be looking to sign onto that at my next appointment at the end of October as I can’t start until 4 weeks post surgery anyways.  When we have more details, I will share them.

I am still working on wrapping my head around this latest episode.  The second surgery in July, there was time leading up to it, I was somewhat prepared and there was chemo coming afterwards with a timeline, and although chemo sucks having a plan brought some comfort.   The seizure, although unexpected and unpleasant, well it’s extraordinary that I have never had a seizure, so I take some pills and you move on, no big deal.   Another recurrence just a couple months past my last surgery I am not sure what I think of this yet. Is this just unlucky, did they catch it early, or does it mean something worse.   I don’t know, and to be honest, I don’t need to know, at least not today.  What I need to know is that I got through it, they took care of this bump and we will attack the next one.  What I need to know is that while recovery is going to take longer, I will recover and day by day I am going to put this summer behind me and get back to myself.   Baby steps.  Yesterday I made dinner, day before I got to the grocery store, today I post an update.    Sure there is lots of TV in between the baby steps, but that is an important part of the rest and recovery process too.

All things considered, I am doing really really well.   My parents and brother were out again during this experience.  While I hate them having to spend time out here with me in hospital, any time to have with your loved ones is a gift.  In fact on September 25^th, Jared, Cam and I decided to put about 650 km on the car and drive to Peyto Lake and then through Saskatchewan River Crossing.    We had great conversation, I got to do a little hike, we watched glaciers through rainbows, brilliant blue rivers and enjoyed reminiscing to a 1988 Top 40 countdown.   If I didn’t need surgery, I would not have spent September 25^th with my brother in this memorable way.   Again not happy for cancer, but am grateful that despite all the bad stuff, there is still many, many things to be grateful for.

Heading back to Ontario next week for my university girlfriends 35^th birthday reunion, which I am so excited for and looking forward to rescheduling my half way to 70 bday party originally scheduled for the September 16^th when I am back home in Calgary.

Lots of new experiences to draw from for more blogs, and I look forward to sharing my insights with you soon.    In my bday card from my bro, he shared a poem called Besides The Autumn Poem Sings by Emily Dickinson and the last line brings me inspiration for this fall

Grant me, Oh Lord, a sunny mind— Thy windy will to bear!

Thanks again for your love, support and prayers which continue to help me stand tall in the wind.