Another Quick Update

Hey Friends,

I have been getting lots of texts and messages asking how I have been doing (which I LOVE and APPRECIATE)! So I wanted to update everyone. I have been going for bloodwork every three days since my blood levels dropped off about two weeks ago. My platelets have recovered to healthy levels, however my white and red blood counts have dropped significantly to “critical” levels. There really isn’t anything they can do at this point… 1) wait till they drop more and I have a transfusion (which I am pretty close to) 2) wait till I get sick and need antibiotics and a transfusion or 3) let them return to healthy levels on their own (which we hope happens soon). I was due to re-start chemo this weekend but that obviously isn’t happening. In the mean time I am staying as healthy as I can and hoping for the best.

Thank you all for your love and support!

A Challenging Week

Hi Friends!

Hope you are all having an awesome summer! Ours started out really great, with the amazing news of my tumour shrinking, but this past week things have turned into a bit of a challenge for me. This has been the most physically demanding week since getting sick, and for the first time I actually feel like a “sick” person. I finished my first cycle of this new chemo almost 3 weeks ago and since last week my blood levels have been dropping very quickly. My white and red blood counts are low, but most concerning is my VERY low platelet counts. I have had uncontrollable bleeding and bruising all over my body for the past few days. Today my family doctor wanted to give me a blood transfusion, but the emergency doctor would not do one without the “sign-off” of my oncologist. I am very, very tired and have next to no energy, but will just take it very easy. Steve has me on a very healthy diet aimed to boost my blood counts. Next week I will have more testing to see if I need a transfusion or if things are coming back on their own. Man, o man though this chemo is kicking my ass! Hope that means it is doing its job! Thanks for your support. Have a wonderful weekend!

xoxo

In case you haven’t heard already…

I am getting a paper written about me! Never has my doctor seen anyone respond so well to radiation. My tumour went from almost a quarter of my brain to only a few very small clumps in the middle. UNREAL!! I am starting a new type of chemo to try and go after those cells (as they are resistant to Temodal at this point). This chemo will be 4 – 6 week long cycles, also done at home. One downside – can’t drink and can’t eat certain foods on new chemo BUT we can’t let that overshadow the AMAZING news we got yesterday. Thank you all for your support, love, prayers, and encouragement.

No Rain, No Rainbows…

No rain, no rainbows”… words of wisdom, for sure.

I first came across this saying on a postcard in Maui – the text was superimposed on a stunning shot of a rainbow soaring over one of their (few gazillion!) lush mountains and valleys. It made me stop, ponder, and appreciate.

This moment of awe and gratitude was echoed recently – but this time, with more profound impact.

It happened on the very first day of a ‘get-away’ week in Myrtle Beach for Lynsey, Steve, Martin & me following Lynsey’s six (hateful!) weeks of radiation. As it turned out, we caught the tail end of “Hurricane Anna” with rain battering the beach, waves crashing ferociously into each other, and the wind whipping palm tree leaves almost horizontally.

Around dinner time that day, things finally began to calm down and then all of a sudden Martin called out, “Hey, look – there’s a rainbow!”

There was indeed a rainbow – and as we all watched, it turned into the most spectacular and moving rainbow I have ever seen.

From the end where it dipped its toes into the ocean, the rainbow swooped high up into the clouds in a magnificent steep arc. As we stood admiring it, its colours seemed to intensify. I started naming the sequence of colours in my head as I looked on… red, orange, yellow, green, blue, indigo, violet… but when I got to the end of the list, I realized that there was in fact, ANOTHER rainbow that began right after that one – almost as though it was attached to the first one. And then came another, and then a fourth one! Each one seemed to be ‘connected to’ or stacked on top of, but just slightly behind the other. It was as though the one furthest away was supporting the one immediately in front and above it, as was the next one and the next one.

I stood mesmerized.

There we were, the four of us… and there IT was, with its four separate but connected rainbows, on display just for us. The fact that each rainbow seemed to be supporting the next one, just added to the impact of this stunning visual. It was profoundly moving.

As we stood there, the rainbows slowly began to fade away… and then, within seconds, they were gone. The impact they had on me, however, has NOT faded in the least.

No rain, no rainbows.

Lynsey’s tumour has certainly provided a heavy helping of “rain” in her life and in the lives of all those who love her. Perhaps this ‘quadruple rainbow‘ was offered to us to remind us that the rainbows DO come.

I expect that scientists and atmospheric gurus would have a perfectly good, logical explanation for what we witnessed, but I prefer to think of it as the Universe’s way of getting our attention and reminding us that there are miracles all around us – we just have to be vigilant in our watchfulness, and be open and ready to receive them.

May we go positively forward from here, carrying in our hearts the beautiful visual of those four rainbows each supporting one another. With the challenge of Lynsey’s radiation treatments behind her, maybe, just maybe, we all have room for a few rainbows now.

Great Article on the Double-Standard of Ontario Cancer Care

One disease. Two drug coverage standards. Shocking.

Great read that really summarizes the issues myself and many other cancer patients are facing.

An Unfortunate Health Update

It is with a very heavy heart that I share this heath update with all of you. . .

Last Friday we found out that those two Grade 3 spots that made me re-start chemo back in May have returned and grown together to form one large Grade 3 spot in the middle of the Grade 2 stuff. This came as a complete surprise as the tumour itself was actually shrinking slightly with each scan up until that point. My oncologist spoke with a radiation oncologist and they decided that radiation, combined with daily chemotherapy, was what was needed. We didn’t find out any details about radiation on Friday, other than that I would need it. Needless to say we had a very stressful weekend!

Yesterday I had my initial consultation with the radiology team. They have decided to radiate the whole tumour as you really only get one chance with radiation due to the very risky long term side effects. They don’t know where the next Grade 3 spot(s) will pop up, but hopefully the radiation will stall things as they are now (there is no chance of shrinkage at this point). Radiating the whole tumour also came as a big shock to us, as in the past we have been told by numerous doctors they would never do radiation because my tumour is too large, I am too young, and there are such serious side effects with doing radiation to such a large area of the brain. But that is the only option we have at this point…. Not fun words to hear.

So what will radiation bring for me? I start radiation March 23 and will be having radiation 5 days a week (Monday – Friday) for 6 weeks at Sunnybrook Hospital, combined with daily chemo. During the week I take my chemo an hour before radiation, on weekends I take chemo at bedtime. I will lose my hair at all the spots the shoot in the radiation beams. It may or may not ever grow back. I will have extreme fatigue that will last for months post radiation. I will have nausea, vomitting, headaches, and low white and red blood cell counts. The long-term/permanent side effects are what are worrying me the most. My short term memory, high brain functioning (such as calculations), and ability to multi-task will all be permanently effected.

I wish I didn’t have to share this news with all of you but you have always offered me such support and love. I will try and post more regularly and keep you updated on how things are going.

Thank you for your support.

Love, Lynsey

Wow it has been ages since I posted!

Hello All!

I can’t believe how long it has been since I posted last. Sorry about that! Merry Christmas and Happy New Year to you all.

I just wanted to share with you all that the results of my last scan (last Thursday) were good and that the tumour is stable. I will continue on with chemo and be checked again in two months time. I am more than half way through the year of chemo, with only 5 more months planned. I can’t believe how quickly time is going by.

Next week I am meeting with a naturopathic oncologist and healer. I will post an update after these appointments with my thoughts and what I learned. I have been practising his concept of healing visualizations each night as I do my chemo and I  believe they are having a positive impact on my health. I hope to learn more about this and how to improve my practice and much more from him! I hope he can also offer some insight on dealing with my anxiety, as this has been causing a lot of seizures for me in the past few months.

Hope you are all well. Will post again in a couple of weeks!

Thanks for your support! xoxo

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