So, Mark & Steph get married tomorrow and it shall be totally awesome!!! Nicole and I are honoured to be involved in their special day not only as guests, but also as a part of their rose ceremony. We are so happy for the both of you and can't wait to watch you both enjoy your day together! Those who were at our wedding will know Mark & Steph as members of our wedding party. Mark gave a very heartfelt speech after Nelson's nearly impossible-to-follow legendary one. Thanks again to you both for your kind words on our wonderful day. Mark & Steph, you are two of the most awesome people we know and you deserve each other like no one else does or could. Thanks also for having us out for your rehearsal which went smoothly and provided priceless moments like Steph's Mom commenting on your "S&M" cookies with a sideways glance and asking "what were you thinking?" which was followed by "I know what you were thinking, but what do you think I was thinking?" ... "I think I know what you were thinking, but were you thinking what I think you were thinking?" This went on for a few minutes and was totally awesome. Note to Matthew: the internet is filled with coupons for products as my wife has recently discovered / exploited. Try a search for "Chocolate Chip Coupons"* and if you yield any positive results, print one off and place it inside the empty bag prior to giving it to your Mom. She'll appreciate the thought.
*I meant a coupon for chocolate chips, though if you can get a hold of a coupon actually MADE out of chocolate chips, A) That would be cool, and B) That would eliminate the need to purchase chocolate chips and would thus be self-defeating. Also C) you would need some sort of really advanced printer with the ability to print (or print on) chocolate.
This being the year of really awesome people getting married, Nicole and I are also looking forward to the wedding of John & Sharon! Word on the street is we'll be seeing you guys this Sunday, which will allow us to do the work of a Canada Post employee and deliver our own RSVP in person only ONE DAY LATE!!! (Not to ruin the suspense, but we are coming).
I have a couple of good stories to tell on this blog which I don't have time for but shall return to over the course of the next week. Remind me: BURNING CABIN + GLOW STICKS! These are two separate stories but each deserves CAPS LOCK!
Meanwhile my medical update is: STILL ALIVE :)
I am still in limbo in terms of my tumour update. Nicole and I will not know a whole heck of a lot until we go for my next MRI and get the subsequent results (set for July 8th). Last update was that it was getting worse but might be pseudo-progression (a not-so-bad thing). After that Nicole and I will deal with out extreme emotions (be they extremely positive or negative) and keep on keepin' on. Should the results be decent enough we might look into a serious-sort-of honeymoon type get away. More on that later though, as at this point planning seems if not pointless, not the most effective use of our time.
Anyways I must now get on with my day with my wife of 31+ days as we enjoy some freshly brewed coffee and drilling from the upstairs apartment! CHEERS!
--
Tom
Thursday, June 23, 2011
Sunday, June 5, 2011
And the results are...?
Not so good. Alas, I'd love to put a tremendously positive spin on the results I got from my last MRI, but I can only do that to a certain extent. At the age of 27, I am no longer a child, yet I'm still growing... specifically in part of my brain. This is not good. The tumour has progressed despite being on my monthly cycle of chemo and other meds. The updated plan is that I shall go one more month as is and then go for yet another MRI to see what (if any) changes have occurred. I shall not panic yet as there is a condition known as Pseudo-Progression which I shall paste a definition of below (source: http://www.theibta.org/PseudoProgression.pdf)
As I understand my situation, there are a couple of scenarios. Scenario "A" is that the chemo meds are not working and I'm screwed (sort of). Scenario "B" is that the chemo meds are working and reacting with the tumour causing it to grow larger. If I'm stuck in scenario "A", the best thing to do would be to take me off the chemo meds that aren't working and to try something else. If I'm in scenario "B" the best thing would be to keep me on the current chemo meds as they'll be better for me in the long run. The doctors have no way of knowing which scenario I'm in. What they can do is wait another month, take another MRI, and if the tumour is larger still it is likely just regular progression (that's bad). If after 4 weeks there has been little to no change, then it is more likely to be pseudo-progression (that's good). So the doctors are saying, better to risk leaving you on meds that aren't working for another month (shortening my lifespan if scenario "A" is true) and get a better idea of what is going on in my head than to prematurely take me off those meds and switch me to alternative meds that would likely not be as effective (if scenario "B" is true), thus shortening my lifespan even more.
It's all a bit much to take in for me. I'd have preferred simple good news than the above, though there truly is no "good news". The best I can receive is "less crappy news" or "relatively better than some of the other possibilities news". I might leave the office with a sigh of relief, but shall never exit Cancercare with a fist pump.
Forever the optimist I cannot give up on that now. I must get through the next painful (emotionally) 4 weeks only to wait a further few days for results that could either be a great relief, or greatly devastating. I still am experiencing no physical pain or problems of any sort. I have no headaches, no nausea, and no extreme exhaustion. I am still able to enjoy my days with Nicole as we experience our newlywed lives together.
I have promised Nicole I will be there to love her and support her forever, and that is still what I plan to do. The hardest thing I face is the realization I might not be able to keep that promise. Nicole has been right to point out to me that I sometimes give too rosy a picture of what we are both going through, leaving others to assume that perhaps it is not so bad (or at least as bad as it is). In truth this is incredibly difficult, and incredibly painful (again emotionally) for both Nicole and I. After we received the last results we did, I can speak for myself in saying it was all I could do from completely melting down before leaving the hospital and arriving back at home. When I got there I did so, and Nicole was there to cry with me for several hours before I fell asleep from wearing myself out. Today again (2 days after receiving the news) I still am experiencing periods where I break down for a while, with Nicole there to try to help me through it. She doesn't have it any easier than I do, and as I've said before I truly believe this is harder on her than it is on me. I am still loving life and doing everything I can to get the most out of it, but it seems that even those best of days have a dark cloud hanging over them. I have lately been experiencing emotions in line with what Nicole has been feeling since the very start. Emotions have ranged from extreme anger at how unfair this situation is, to feelings of helplessness and general sadness. I try to hold on to the optimism as much and as strongly as I can, but it isn't as easy as I'd like. Life has become a hurdle race, with each day reminding myself that I must simply get to the next one. First of all it was getting to the anniversary of Nicole and I (and the day I would propose to my current wife). Then it was getting to the end of the school year and graduating. Then it became getting to the wedding. Now, I'm focusing on early July when I shall go for my next scan (date TBA), and receiving the subsequent results. I won't let myself start to play the games of "what if" before I get there. What I'm going to do is assume this is a case of pseudo-progression and just get the most joy I can out of each day that I spend with my lovely, kind, and beyond supportive wife. I could not be writing any of this blog if it were not for the freshly named Nicole O'Leary-Sontag who deserves more thanks than I could ever give or express to her.
Rest assured I shall still post completely off-the-wall status updates on Facebook on a regular basis, and will update all of you on how things go. I must admit however that I am much quicker to get on the updates when the news is good. So as I started: "And the results are...?" inconclusive as of now. Me and the tumour are going into overtime which will last 4 weeks (a little longer than Game 2 of the playoffs the other night) and we'll go from there. Thanks to everyone for their support & of course, Cheers!
--
Tom
The current standard of care for newly diagnosed glioblastoma multiforme (GBM) brain tumours is surgical resection followed by radiotherapy (RT) plus concomitant and adjuvant temozolomide chemotherapy (TMZ), commonly referred to as the “Stupp protocol”.
Studies have suggested that possibly half of all patients with malignant gliomas who have undergone chemoradiotherapy may show signs of early disease progression in their first post-treatment MRI scan, and that a significant proportion of these cases may be pseudo-progression. This phenomenon has been attributed to a transient chemoradiotherapy-induced treatment effect referred to in the literature as “pseudo-progression”.
The question of pseudo-progression and how long to administer adjuvant temozolomide is the subject of on-going study within the neuro-oncology community but we believe it is necessary to alert oncologists and patients to the issues involved. We would be very disappointed if any brain tumour patient’s chance of extended survival was compromised by premature withdrawal from adjuvant temozolomide therapy without consideration of all the relevant factors.
As I understand my situation, there are a couple of scenarios. Scenario "A" is that the chemo meds are not working and I'm screwed (sort of). Scenario "B" is that the chemo meds are working and reacting with the tumour causing it to grow larger. If I'm stuck in scenario "A", the best thing to do would be to take me off the chemo meds that aren't working and to try something else. If I'm in scenario "B" the best thing would be to keep me on the current chemo meds as they'll be better for me in the long run. The doctors have no way of knowing which scenario I'm in. What they can do is wait another month, take another MRI, and if the tumour is larger still it is likely just regular progression (that's bad). If after 4 weeks there has been little to no change, then it is more likely to be pseudo-progression (that's good). So the doctors are saying, better to risk leaving you on meds that aren't working for another month (shortening my lifespan if scenario "A" is true) and get a better idea of what is going on in my head than to prematurely take me off those meds and switch me to alternative meds that would likely not be as effective (if scenario "B" is true), thus shortening my lifespan even more.
It's all a bit much to take in for me. I'd have preferred simple good news than the above, though there truly is no "good news". The best I can receive is "less crappy news" or "relatively better than some of the other possibilities news". I might leave the office with a sigh of relief, but shall never exit Cancercare with a fist pump.
Forever the optimist I cannot give up on that now. I must get through the next painful (emotionally) 4 weeks only to wait a further few days for results that could either be a great relief, or greatly devastating. I still am experiencing no physical pain or problems of any sort. I have no headaches, no nausea, and no extreme exhaustion. I am still able to enjoy my days with Nicole as we experience our newlywed lives together.
I have promised Nicole I will be there to love her and support her forever, and that is still what I plan to do. The hardest thing I face is the realization I might not be able to keep that promise. Nicole has been right to point out to me that I sometimes give too rosy a picture of what we are both going through, leaving others to assume that perhaps it is not so bad (or at least as bad as it is). In truth this is incredibly difficult, and incredibly painful (again emotionally) for both Nicole and I. After we received the last results we did, I can speak for myself in saying it was all I could do from completely melting down before leaving the hospital and arriving back at home. When I got there I did so, and Nicole was there to cry with me for several hours before I fell asleep from wearing myself out. Today again (2 days after receiving the news) I still am experiencing periods where I break down for a while, with Nicole there to try to help me through it. She doesn't have it any easier than I do, and as I've said before I truly believe this is harder on her than it is on me. I am still loving life and doing everything I can to get the most out of it, but it seems that even those best of days have a dark cloud hanging over them. I have lately been experiencing emotions in line with what Nicole has been feeling since the very start. Emotions have ranged from extreme anger at how unfair this situation is, to feelings of helplessness and general sadness. I try to hold on to the optimism as much and as strongly as I can, but it isn't as easy as I'd like. Life has become a hurdle race, with each day reminding myself that I must simply get to the next one. First of all it was getting to the anniversary of Nicole and I (and the day I would propose to my current wife). Then it was getting to the end of the school year and graduating. Then it became getting to the wedding. Now, I'm focusing on early July when I shall go for my next scan (date TBA), and receiving the subsequent results. I won't let myself start to play the games of "what if" before I get there. What I'm going to do is assume this is a case of pseudo-progression and just get the most joy I can out of each day that I spend with my lovely, kind, and beyond supportive wife. I could not be writing any of this blog if it were not for the freshly named Nicole O'Leary-Sontag who deserves more thanks than I could ever give or express to her.
Rest assured I shall still post completely off-the-wall status updates on Facebook on a regular basis, and will update all of you on how things go. I must admit however that I am much quicker to get on the updates when the news is good. So as I started: "And the results are...?" inconclusive as of now. Me and the tumour are going into overtime which will last 4 weeks (a little longer than Game 2 of the playoffs the other night) and we'll go from there. Thanks to everyone for their support & of course, Cheers!
--
Tom
Subscribe to:
Posts (Atom)