health | Sarge-Central

Hi, this is Carol Anne. It’s time for a long overdue update! There is a bunch of news here, so take your time.

The good news is: I am now done chemotherapy treatments and they seem to have successfully kept the tumor from progressing!

Back in March I was experiencing neuropathy in my right foot. At that point we dropped the Vincristine part of my chemo treatment (the ‘V’ in the PVC treatment) but continued with the P-C pill-based drugs. April 22^nd I met in person with my medical oncologist who was surprised at how well I looked and how well I was doing. I was in really good shape, so we decided to continue with round five of chemo. Three rounds is what most of the studies are based on; four is the desired standard; and five was a bonus! However, six has been cancelled.

Ten days later, during round five of chemo, I had a seizure. It took me three days to ‘recover,’ but it has all but grounded me. Thanks to Diane and Saanich recreation I am back in my twice a week exercise class. I am keeping my core strong and I continue to build torso strength and maintain my balance. But I am no longer riding my bike and I am not allowed to drive, so I am dependent on others for rides everywhere. This lack of independence sucks.

The Provincial Tumor Board met on Friday where my case was discussed. Aside from the pathologist being all excited about my pathology report, the result has not changed: it’s still an oligodendroglioma, so we’ve picked the right treatment and for the most part it’s been working.

MRI Updates: I had my first post radiation MRI in December. It showed two areas of new intracranial mass. The next MRI in February showed the same. We repeated the MRI in May, but had a fancy perfusion MRI which can differentiate between radiation necrosis and new growth. The May 4^th MRI was taken to the provincial tumour board for review. (We just got an update this week which is why this update is so delayed as we wanted more information.)

The tumor board has confirmed, and everyone around it was an agreement, that the two new masses are radiation necrosis, not tumour growth. To the chemo people this is good news because it means their treatment worked and the problem is with radiation, so the radiation folks have to fix it. I have an appointment with my radiation oncologist this coming Thursday June 12^th.

The challenge of radiation necrosis is that it is two masses in my right temporal lobe which are causing all sorts of symptoms. These masses are probably what triggered the seizure, and all the symptoms I had before my surgery are back and worse. I’m losing my sense of balance. My energy levels are exceptionally low. My memory and thought processing is compromised. The depression is back, and my ability to plan and make rational decisions is compromised. I have a pronounced tremor. At this point I am on steroids in the hopes that this will reduce the swelling of these masses and improve my symptoms. In the meantime, I am very dependent on the kindness of others in my family to feed myself get myself around and make all decisions.

Good morning everyone! Carol Anne here.

It’s been a week since I woke up in the hospital and received the news that the surgery had been so successful within minutes. My recovery started to be equally amazing. I read the above and realize you all had a very different experience than I did. From my perspective. I had so lost a piece of myself and lost all the words to be able to describe how that was – that was the tumour – at the same time there was the cyst which was filled with fluid and was pushing my brain around, causing me to lose balance, lose muscle control, lose facial control control, and lose bladder control. So, waking up after the surgery almost immediately with the pressure from the cyst released, I felt stable again. My muscles did what I asked them to, and I very quickly regained physical strength.

Underneath that I found a piece of my brain that I’ve lost for a while, and I didn’t realize what part of me had disappeared until it started to come back. One of the things, perhaps the most notable to me, was lying recovering in a neuroscience floor where absolutely everyone around me had just had brain surgery. My brain eavesdropped and listened and learned, and it’s been a while since since I’ve chosen to learn and derive such pleasure from it.

The other really important thing to mention is that the healthcare system did not fail me when I needed it. It was there, and I was served, and I have been healed. The failure is more in our communities and the relationships that we no longer make time. My new doctor had seen me in person a couple of times, but until Morgan came in stamping his feet, he confessed that he didn’t know who I was so he couldn’t see a difference. So it’s less about Drs and access to Drs and more about building those health relationships where people learn you, know you, and care enough to pursue the next steps. It is more about the delivery of health care, than even the access to it. the reports are there, the caring delivery concepts – its time to not just add more stressed doctors, but to rebuild and make the systemic changes that allows caring back into such a caring profession.

So many blessings have come from this experience. I feel myself again – better than I have in over a year! As many of you know, we have an open household and a large family and all the work that we spend building relationships just came back to us in spades when we really needed it. All of you were much more afraid than I was. I kept hearing of our wonderful friends who stepped up and were there for my kids and my family

A lot of the anger that I have about the situation comes from what we normalized. About 10 years ago I remember going to the doctor being exhausted and I was told “you are a working mother of course you’re exhausted. The workplace is full of stress. You’re also looking after your children, how could you be anything but exhausted.” Was I having headaches? Sure. Did I identify them as being such? No. In hindsight, we’re seeing all of the justifications. I normalizied symptoms that I shouldn’t have been normalizing: the headaches were caused by not enough caffeine; the vomiting happened because I carry my stress in my gut; and so on. The only truly distinct thing that I could say over and over and over again is that “I’m just not myself.” But as a 50-year-old woman, it was so easy to Normalize that as menopause and depression and burn out.

Thank you all for following along this journey with us, not just in these postings, but actually walking beside us. We are also very very grateful. There is a myriad of things that could have gone really wrong in the middle times – I recognize not only my rediscovering my language – I can find the regular words – but my 25 cent words have come back too!

It could’ve turned out completely differently and all I can say is, for the moment, I’m alive. I am feeling well and we are really working hard at the moment to be in the moment and celebrate the moment where we are finding ourselves for now.

We are at the beginning of a journey and we will keep you posted as new information evolves. I will be going on Long term disability and Morgan and I are going to take some time, and enjoy some time to make space for everything that happened.

An Update from Carol Anne

An Update from Carol Anne