For the final #braintumorthursday of Brain Tumor Awarness Month #BTAM, after outlining this past year’s surgery and treatment adventures, I’m reflecting on my feelings toward all of these steps along the way. Or, more accurately, on the sum of the parts. I can start by saying that I’ve passed two more milestones in the week since my last post. Since surgery in September 2015, I’ve been having an MRI scan every three months. My scan immediately after surgery showed some tumour residue cells remaining after surgery. This past week I received results of my second clean scan in a row, showing no tumour cells and “no other irregularities”. Good to know.
The second milestone I’ve passed is my last round of six months of follow-on oral temozolomide treatments, post radiation.
My reaction to these milestones taught me another little life lesson. I have a pretty stable, middle-of-the road personality, in general. My highs are not mountains and my lows are not deep. I’ve been classified a “thinker” rather than a “feeler”. I think this has helped me in all the things I’ve done this past year, and there have been many times someone has complimented me on my strength in the face of it all, and while I deeply thank that person for the sentiment, I always think “I’m just focusing on taking it day by day and not being dramatic, I’m not sure that’s worthy of such praise!”.
A funny think occurred to me, though, with this undeniably good news the past week. I didn’t feel all that excited. I really didn’t. People ask, “oh, you must be so relieved, you must be so happy,” and I say yes and thank you, but again, inside I’m thinking, “What is wrong with me? I don’t feel like throwing a party over this, am I a robot???”
Case in point: when I received my last MRI scan results, my oncologist stepped in the room and reported they were not good, that the scan looked much worse than three months ago. He took care to emphasize that he felt this report may be in error, and he wanted us to wait while he got in touch directly with the imaging department. Thirty minutes later, he returned to say the scan was clear, and that there had been a paperwork mix-up. I felt the same, both conversations. At first I thought, “Okay, we know things could worsen, we’ll figure out what comes next.” Then when he came back with the good news, I thought “Okay, well that’s this scan down, good.”
No doubt, part of this is managing expectations, and living with fear of recurrence. I don’t think I can ever again sit in a doctor’s office and tell myself the worst case is impossible. But I also realized that there’s nothing wrong with me, I just don’t get too high or too low. It’s funny, actually, the juxtaposition, when I saw that the two sides of the same trait are perceived so differently. When I am stoic in the face of adversity, I am being strong and inspiring. When I am calm in receiving good news, I wonder what’s wrong with me!
So, my goal this week is to give myself permission to rejoice and celebrate. But only as much as it feels sincere; I don’t feel pressured to over-celebrate, because I know my emotional reactions are appropriate for me, and are also what get me through the tough times on an even keel.
Thanks to everyone who has participated in raising awareness of brain tumors in Canada and the US this month, from social media advocates and bloggers, to people who are getting out to walks and events, and all of the terrific organizations that work to raise awareness and support researchers, and the researchers and clinicians working in this area. #BTAM
I can relate to waiting for the next scan. I’m finally done chemo. But every time I go in for another MRI, I get anxious. The MRI scan itself is not the problem. It’s the lag time before I get the results.
Keep raising the fist and flipping the bird.
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I identify with everything you share in this post–it reminds me of how I felt when I completed Temodar. And I also identify with your reaction to people praising you for your ability to hold your shit together in face of this craziness.
Thank you for sharing.
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Thanks for reading, Liz!
You’re inspiring me and making think about life and the many “crossroads we come to. Your train of thought has opened up myself and my thinking. Thanxs for opening up your soul to us. Many blessings to you and your family!
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Thanks for your kind comments and for reading!
Dear Alix, congratulations ❤ Your attitude is most certainly one of the strongest aspects of your success. This is an attitude of a real warrior. Japanese samurai taught their children this attitude from the age of four years. The ability to remain stable in your emotions and to you have zero expectations is a prerequisite to physiological stability that in the end saves your life – just like in the case of the samurai. There is a lot of connective pathways of interdependence between mental and physical stability, between mind and body. One of them is a stable correlation between levels of cortisol, hormone of chronic stress and levels of insulin, one of the major regulators of human metabolism. When you cortisol is high you are not able to use fat as principal source for energy for all of your body cells inclusive glial cells in your brain. The latter being a prerequisite to establishment of a strong healing process through therapeutic ketosis. This is a crucial part of my own work with my cancer clients with both brain cancers as glioblastoma, blood cancer and different types of metastatic cancers. In my protocol are use Buteyko breathing normalisation and TKD IF/CR for optimisation of energy acquisition. These to protocols give a beautiful synergetic effect in a variety of therapeutic pathways dot to optimise energy distribution use mental, physical and immune training through something I call three-dimensional multipurpose exercise. Your story is a valuable source of inspiration for me and other people trying to understand the depths of human health by connecting the dots. That is what I call – Integrative Health Engineering. It can be a strong supplementation to traditional modern Western view on medicine. To say by the least. Warm hug from Denmark ❤
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I found this blog through Ketodiet blog and just wanted to say I wish something like this had been around in 2011. I had 5 months of chemo then a month of daily radiotherapy in South Africa for a rapid Hodgkin’s lymphoma which started in the nasal passage and went behind the eye and into the head and was inoperable although I cannot fault the treatment [and they did save my life] I had no idea of what to expect. These insights would have been a great help, you are such an inspiration.
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Thanks so very much, and thanks for reading! I also admin a Facebook group called Ketogenic Diet for Cancer, if you’re interested in group discussion there. Best!
Reading through the entirety of your blog over the last few days I think i’ve fallen in love with you – but on account of the husband, I now make do with the thought our excised tumours might have got eloped.
Great read – awesome resource!
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Haha, I like that mental image, thanks very much. And thanks for reading.
And still a comfort to revisit!
Out of curiosity, for better and for worse I adopted quite a hardline ketogenic diet a little way back and generally skirt the ‘therapeutic ratios’ when testing my blood – while I still have irregular seizures (that have always manifested in the tonic clonic vein), I notice my ketone levels drop to practically 0 and have to be worked back up in the weeks following an episode, this sometimes coincides with a tiny rise in blood sugar but nothing too grievous on that front.
I’ve even measured some of my ‘best’ readings the day prior to a seizure, which might lend then the ‘worst’ a day later.
Have you ever registered anything similar or happened upon any of the mechanisms that might be at work here?
I’ve just kinda labelled it a metabolic hiccup or reset.
Thanks again for your efforts and energies.
I’ve never experienced anything like that myself; I only had seizures before my tumour was removed, and haven’t had any in the year since. I haven’t heard of that from others, either, but that doesn’t mean your experience is isolated. Do you follow Andrew Scarborough’s blog at all? He has done a great deal of self experimentation and study regarding seizures and brain cancer, and keto diet. He might have heard of something like this, or even experiences it himself.
Hello! I want to thank you again for sharing your thoughts and experiences with this. I have posted before, but I have the same type of tumor as you, though it is inoperable. Immediately after diagnosis in 2012, I started a ketogenic diet, and my MRIs had shown that the tumor had been stable, but are now showing progression. I believe that I will be starting radiation and chemo soon, but I am very anxious/nervous about it all. I wondered, how are you feeling now after completing your treatments? I am not as worried about the short term effects of treatment as I am about the long term side effects and the unknown. I haven’t met anyone yet with this specific type of tumor who has done the diet and and gone through treatment, so I would love any insight that you could share about your most recent experiences post-treatment.
Thank you again for sharing your story. It has truly helped me along my journey.
Hi, Anne Marie, thanks for reaching out. I’m sorry to hear you’ve experienced tumour progression, I remember how hearing that news felt. For me, I also felt some sense of relief, as crazy as that sounds, because the thing I’d been fearing had finally happened, and now we were going to take action. I know you’re familiar with the different stages of my treatment from the blog. I can emphasize that it wasn’t as bad as I thought it would be. I stuck to my keto principles during my whole treatment, and I do believe I had better energy and fewer side effects because of it; my doctors and nurses all commented on how well I came through. I took the very good advice of Patricia Daly and didn’t bother measuring blood glucose or ketones during treatment, because the numbers are discouraging, but I just reminded myself that all the treatments, not the ketones, were attacking the cancer cells during that time, and I was using the diet for other energy and anti-inflammatory effects. She also advised to stay away from any supplements during treatment, which I did. Primarily, radiation made me tired, but I was lucky to have benefits, be off work, and not have young kids or other demands like so many people do. I napped when I was tired and ate when I was hungry. I gained weight from the steroids, but I didn’t worry about it. I had some brain fog, again from radiation mostly, but again didn’t worry over it. I did have some nausea over the six months of higher dose chemo, but it was well managed with medication; I lost some appetite during those days too, and spent the three weeks between rounds bouncing back. Every day became really about the routine of treatment and self-care, and that was really not a bad space. Since completing treatment, the one thing I’ve struggled with is coming to terms with not being immediately back to 100% in terms of energy, and I have some headaches. I tried to do too much too soon, again, because I think I felt like treatment wasn’t that “tough” really.
Sorry, technical glitch, posted that comment too soon. I think we all have to come to terms with how we deal with fear of the future and the unknowns – long term effects, recurrence. For me, I try to remember that no one really has any guarantees on the unknowns in their futures, I just know it more than most people I know. And I know that the treatments I had were necessary for me. So I’ve found a way to sit with all of that and be kind to myself around it. I wish you the same. You’re at a scary point in the process, no joke. Reach out for help when you need it. Feel free to message me anytime, you can reach me on Facebook as well.
Thank you so much for taking the time to respond to me. It is so helpful to hear about someone else’s personal experience rather than what the doctors believe I will or will not feel. I know that everyone is different, but it is just nice to hear it from someone else!
I am wondering, did you have the option of only doing radiation first, then starting chemo? Or did your doctors believe that the most effective treatment was to start both at the same time? The doctors I have seen seem to have different opinions about that, which makes it slightly more difficult in deciding what to do. Do you continue to take seizure medication?
Sorry for all of my questions! I am just feeling overwhelmed and believe that you have always had a great perspective in the way that you have handled both the treatment and the diet.
Thank you again!
It’s nice for me too, to connect with people going through the same things, so thank you! My doctors pretty much agreed that my best approach was six weeks of radiation, with Temozolomide daily, then one month off, then six months of Temo, at a higher dose, one week per month. I’ve heard from a lot of other folks who were also presented with this as the standard approach, and some who had things in a different order, or who had a bad time with the chemo, so adjusted accordingly. And yes, I was on seizure meds the whole time and still am. Just recently I met with my neurologist to discuss switching to an anti-seizure med that also is effective for migraines. If that works out, I might stay on them for a time. I haven’t had a seizure since surgery last Sept, though, and I was having them before, even with the meds.