Twenty twelve is starting out with a BANG. The Texas EBV+ positive vaccine is working and we are set to begin to make dates for flights! Therefore my partner and I are desperate to attempt to fly both of us down this round since I will be flying out of Houston the same day as my infusion, and probably won't be feeling too well. Dr. Bollard has decided that I will receive these infusions every six weeks until the cancer begins to progress... we're hoping I will be able to stay this for a long time coming, since this vaccine does not cause ANY side effects nor is there any toxicity levels: the truth is, I haven't felt this good since I was twenty-two, it's so amazing to finally have my life back :)
Anyway! Back on topic -- Due to my lovely internship schedule, I will have to fly down on a Sunday in January, infuse on a Monday morning, and fly back Monday afternoon/evening, just in time to intern on Tuesday morning. The second round will be held in March, and the third round in April. Thus, having Rich with me on that Monday would be crucial if we are able to find flights for both of us. But if not, I have traveled down to TX alone, and can surely do it again!
In turn, we are desperately asking anyone who is out there if they would be willing to donate their frequent flyer miles to my cause. We are looking to fly from Philadelphia airport to Houston, TX and flying back from Houston, TX to Philadelphia. If you are able to donate, please email me at: RebekahFurey@mac.com. In turn, we are so, so deeply appreciative of all of your generosity and kindness in even thinking of helping me through this cancer journey and on to a treatment that is working...
If you would like to help, but do not have frequent flyer miles, we are also in need of money for food, lodging, and transportation while we are in Texas over the next six months -- please feel free to click on the 'Donate' button to the right of your screen under 'Houston Treatment Donations.' -- every penny helps us on these trips, and even a 3-5 dollar donation makes a difference -- Rich will tell you this, because if we have enough money, we splurge on buying a piece of the most heavenly pecan pie we've ever tasted at Goode's BBQ down in the heart of Houston :)
Luckily, after this sudden trip we will have the future dates of infusions, months in advance and therefore affording and scheduling flights will be a bit easier than this month, and the last two infusions.
I can't even begin to thank those that have made contributions and donations for food and lodging, for this round, I will always be forever in debt to each of you for making this treatment possible. Thank you, Thank you, Thank you...
Again, I am forever grateful to each of you for your emotional support all these years, but now, on top of that, so many of you have taken the time and energy to write, donate, and support me through this trial in Texas and I honestly could never thank you all enough.
Love and Light my loves!
And Happiest of Twenty-Twelve to all of you!
B.
Showing posts with label EBV positive tumor. Show all posts
Showing posts with label EBV positive tumor. Show all posts
Wednesday, January 4, 2012
Thursday, December 29, 2011
Goodbye 2011, Hello 2012!
Two Thousand and eleven has been an incredible, incredible year -- and thankfully it is ending in an amazing way. A week ago my PET/CT scan revealed stable disease, and I could NOT have asked for better results. This concludes that the Texas Refractory Arm (EBV+ Trial) IS working! Which we are all very excited about.
At this point, I will receive the infusion once ever 6-8 weeks (this will be my decision) and then scan every 12 weeks. Which means, I will fly to Texas a lot over the next six months but it will definitely be worth it. Speaking of Texas, I wanted to apologize for not posting this sooner AND thank the numerous donors from the first few rounds of treatment, without all of you I would not have been able to fly, pay for lodging, or eat in Texas, and I thank each of you from the bottom of my heart.
Thank you SO SO much to: Ms. Lisa Herlihy, Ms. Tywyn Daniels, Ms. Karen Regan, Ms. Judy Kilty, Teri Krieger, Ms. Carrie Witting & Mr. Andrew Lewis, Ms. Alyson Weissman, Mr. John Marco, Ms. Jenna Jezierski & Mr. Ajay Siekierski, Ms. Barbara Chambers, Ms. Katy Cooper, Mr. James OHair, Ms. Alannah DiBona, Ms. Courtney Forsberg, Ms. Linda F. Davidson, Mr. Chris Carr, Ms. Michelle McDonald, Ms. Eve Braley, Ms. Jussara Berry, Ms. Caitlyn Gable, Ms. Ruth Hendry, Ms. Tianna McCormick, Ms. Jessie Oettinger, Ms. Jessica Smarsch, Ms. Karen Tully, my uncle and my lovely brother. For those who donated five dollars or more -- thank you, thank you, thank you!
And with that, I will once again be going down to Texas for my next infusion mid to late January, and therefore, will obviously need a bit more help. So if you are able at all to open your hearts and donate to the 'Houston Treatment Donations' on the right side of the screen through paypal I will be forever, forever, in debt to each of you. Just click on the donate button and you're able to donate ANY amount, this can be 1 dollar, or anything more!
We are also desperately looking for ANYONE with frequent flyer miles that would be willing to donate to my flights from PHL>TX and back, so I can get to my treatment this month. If you have any available miles and would like to donate, please, please email me at: RebekahFurey@mac.com
Again, without all of the donors, and good friends, I would never even begin to be able to receive this form of treatment -- a treatment that is actually working! So again, thank you.
Although life is good, healthy, and normal over here. I wanted to take a moment to honor and send peace to the Reed Family who is dealing with the incredible loss of Mike Reed, a fellow refractory hedger who fought for twelve years and is one of the refractory folks community most honored, respected, and loving pioneers of the cancer community. I encourage you, your friends and family to take a moment and send love to the Reed family, to wife April, and baby Trent. Therefore I encourage you to stop by Mike's CaringBridge Site and send a message to April and Mike's family.
You can visit and leave them a message by clicking here.
There are never any words that justify the loss of a great man like Mike; therefore, those who are refractory continue to follow his footsteps, and those who knew Mike and his family I know will continue to treat the world and the people they love around them, just as Mike has: with grace, patience, kindness, respect and love.
As the close of 2011 approaches, I feel grateful that I have met such souls as Mike, and so many others we have lost this year, and those who continue to live with this disease. Although there have been some small bumps in the road these last few months, it has been a pretty wonderful year and I am thankful that I get to close off 2011 with a partner I adore, a family who continues to be supportive, friends who never leave my side, and a future worth planning.
To each and every one of you, I wish you love and a wonderful New Years Eve :)
And so does Ms. Zooey Deshanel and Mr. Joseph Gordon...
Sending all of you the happiest of holiday wishes,
the best for this new year,
and of course, love, peace and strength to the Reed's.
xoxo,
B.
Sunday, November 6, 2011
Texas Infusion 2011: Complete!
I finally received the much anticipated second round of texas infusions at the end of October and it was another complete success! Unfortunately due to my lovely partner having a stomach bug and some fevers, I took to Texas on my own -- and it went down without a hitch.
This is great news for the future because I was able to fly all the way down by myself without any big complications. Although it's always nice to have a caregiver by your side, it's even more wonderful to know that if push comes to shove I need to do this on my own again, I am able.
Once again, this trip in no way shape or form would have been possible without lots of key players. Big, HUGE thanks to my amazing brother and uncle for providing airfare for this round! And, huge huge thanks to those who donated other amounts that were able to get me to and from the airport, to the hospital, to the hotel, and back to the airport all in one piece -- while still being able to eat foods that I wanted :) Whether you donated 5 dollars or more, each penny that I received was used. Those who donated a few days later after Texas will be used for future infusions.
That is, we HOPE there will be future infusions. The GOOD news from this trip is we recently tested my ESR/SED rate levels and they are going DOWN. ESR/SED rate measures the inflammation in our bodies -- in this case, it measure my cancer. And in the past it's been indicative of what is happening with my disease. From May, during my relapse til September my ESR has increased 10 points within every month. This month? It decreased ten points. At the rate is located at a 43. Not bad, not bad at all.
Therefore we think this vaccine might actually be working. The game plan is to scan mid-December, and if it works? We continue to infuse every six weeks down in Texas. That means all of my infusions for 2011 are complete! What a way to end a year -- one whole entire year without any toxic chemotherapy. I could not ask for anything more.
A lot of lovely, wonderful, people have asked me lately how Texas was and how things are. October was a very, very, busy, chaotic, jam-packed month. And I have much to update but I wanted to just send a quick note that YES, my infusions are complete! I am feeling fabulous! I have recieved all of your donations! (which I will post a thank you to all the individuals this month, because I know some of you are concerned if your payments went through). And life is busy, but amazing in all aspects of my life.
It's been amazing feeling normal, celebrating with friends over things we should be celebrating about in our twenties -- such as one of my best friend's weddings that I attended this month. I hope you're enjoying life as much as I am, and can not thank you all enough for contributing these last few months. You all have opened your hearts and pockets to keep me healthy and happy and smiling wide!
And here are some pictures to prove it :)
Love and Light,
B!
This is great news for the future because I was able to fly all the way down by myself without any big complications. Although it's always nice to have a caregiver by your side, it's even more wonderful to know that if push comes to shove I need to do this on my own again, I am able.
Once again, this trip in no way shape or form would have been possible without lots of key players. Big, HUGE thanks to my amazing brother and uncle for providing airfare for this round! And, huge huge thanks to those who donated other amounts that were able to get me to and from the airport, to the hospital, to the hotel, and back to the airport all in one piece -- while still being able to eat foods that I wanted :) Whether you donated 5 dollars or more, each penny that I received was used. Those who donated a few days later after Texas will be used for future infusions.
That is, we HOPE there will be future infusions. The GOOD news from this trip is we recently tested my ESR/SED rate levels and they are going DOWN. ESR/SED rate measures the inflammation in our bodies -- in this case, it measure my cancer. And in the past it's been indicative of what is happening with my disease. From May, during my relapse til September my ESR has increased 10 points within every month. This month? It decreased ten points. At the rate is located at a 43. Not bad, not bad at all.
Therefore we think this vaccine might actually be working. The game plan is to scan mid-December, and if it works? We continue to infuse every six weeks down in Texas. That means all of my infusions for 2011 are complete! What a way to end a year -- one whole entire year without any toxic chemotherapy. I could not ask for anything more.
A lot of lovely, wonderful, people have asked me lately how Texas was and how things are. October was a very, very, busy, chaotic, jam-packed month. And I have much to update but I wanted to just send a quick note that YES, my infusions are complete! I am feeling fabulous! I have recieved all of your donations! (which I will post a thank you to all the individuals this month, because I know some of you are concerned if your payments went through). And life is busy, but amazing in all aspects of my life.
It's been amazing feeling normal, celebrating with friends over things we should be celebrating about in our twenties -- such as one of my best friend's weddings that I attended this month. I hope you're enjoying life as much as I am, and can not thank you all enough for contributing these last few months. You all have opened your hearts and pockets to keep me healthy and happy and smiling wide!
And here are some pictures to prove it :)
Love and Light,
B!
Wednesday, October 19, 2011
Texas, Round One - Complete!
Round one in Texas was a complete success! We were able to fly in and out within almost a twenty four hour period, thanks to our good friend Liz Masson who accommodated our airfare, and all of those other wonderful people who supplied us with enough money to handle the 120 dollar (yikes!) round trip cab fare from the airport to the hotel and other travel costs.
We have luckily booked one way toward Texas for our next round which is on October 26th due to my amazing brother who had an airline voucher, and are now holding out for Corporate Angels to find us a return flight. I've received a lot of "I want to help, what do I do" kinda of emails lately. For those who would like to help us out with our cab fare, food, hotel costs, parking, and other odds and ends, please look to your right of the screen where it has a DONATE button and above it says "Donations for Houston Treatment," click on the button, and you can donate (with a debit, credit card, or check) as low as 1 dollar, or whatever amount you wish! Any money you decide to donate helps us along this last leg of our trip for this treatment. And we so, so appreciate it.
I will definitely update more once the second infusion is complete, and can never thank all of you enough for your kindness. Without all of you, this treatment, which we hope is truly working this time around! Would not be possible. I am forever grateful to all of you... and I will never be able to say it enough.
We hope you are taking in the beauty of Fall... it's been beautiful up here in Pennsylvania
And Lily and I are enjoying every minute of it!
Love and Light,
B.
We have luckily booked one way toward Texas for our next round which is on October 26th due to my amazing brother who had an airline voucher, and are now holding out for Corporate Angels to find us a return flight. I've received a lot of "I want to help, what do I do" kinda of emails lately. For those who would like to help us out with our cab fare, food, hotel costs, parking, and other odds and ends, please look to your right of the screen where it has a DONATE button and above it says "Donations for Houston Treatment," click on the button, and you can donate (with a debit, credit card, or check) as low as 1 dollar, or whatever amount you wish! Any money you decide to donate helps us along this last leg of our trip for this treatment. And we so, so appreciate it.
I will definitely update more once the second infusion is complete, and can never thank all of you enough for your kindness. Without all of you, this treatment, which we hope is truly working this time around! Would not be possible. I am forever grateful to all of you... and I will never be able to say it enough.
We hope you are taking in the beauty of Fall... it's been beautiful up here in Pennsylvania
And Lily and I are enjoying every minute of it!
Happy Fall my loves!
Photo Credit: Katie N. Ehrman at the Poconos
Love and Light,
B.
Monday, October 10, 2011
Treatment, Hotels, and Flights -- oh my!
In two days my amazing partner (Rich) and I will set course again for Houston, TX. Since the relapse in May it has been decided that my cancer is not growing fast enough to throw in another toxic treatment (yay!). Therefore, we are attempting the EBV+ vaccine again, and THIS time around I will be put on the relapse arm opposed to the remission arm in hopes that this arm will wreak more havoc on the cancer.
Attempting another treatment to Texas is exciting (another chance for this treatment to work) but a bit financially stressful. Therefore I just wanted to thank everyone who has sent their positive vibes, opened their hearts, and have also opened their wallets for us to make this trip possible. I am so humbled, grateful, and words can never express how appreciative I am for the kindness of so many individuals out there.
Originally we had hoped Corporate Angels which is a wonderful organization that flies cancer patients for free would be able to score us a flight. However, they were unable to find a flight in the areas of our departure and arrivals in the days we need for treatment. So, the wonderful and talented Ms. Liz Masson, generously offered her wonderful miles to me and Rich -- and we have our first flight booked!!
We leave Wednesday (October 12th) for TX at dawn and leave Thursday (October 13th) at dawn so I am able to make my night shift on Thursday at my internship. Orginially Rich and I wanted to fly in and out the same day; however, with this round of treatment and the obversvation period it is literally impossible for us to find a flight to arrive there and then late enough to leave to have all the tests, obversvation, ect, complete -- we would most likely miss our flight.
Therefore we had to make the decision to stay over Wednesday night, something we were not sure how we were financially going to be able to handle. Luckily, some amazing and ridiculously generous people, in addition to Ms. Masson and her miles, donated money in the last two weeks and we will just have enough to stay at a hotel Wednesday, eat, and enough for cab fare. I am so incredibly lucky for these people as they are making this trip possible.
So! Huge, huge thanks to: Ms. Judy Kilty, Ms. Alyson Weissman, Ms. Barbara Chambers, Ms. Katy Cooper, Mr. James Oheir, Ms. Alannah DiBona, Ms. Courtney Forsberg, Ms. Linda Davidson, Ms. Ruth Henry, Mr. Chris Carr, and Ms. Michelle McDonald. Without all of you, and Ms. Masson, Rich and I would not make this trip, nor would I receive this form of treatment. I will be forever grateful for all of you and your hearts.
The last thing I absolutely hate to do on my blog is ask for any charity. However, the trips to Texas this fall were very last minute as we didn't know when my cells would be ready. With this first trip booked and ready to roll we are now attempting to figure out the second part of this treatment. To complete this round Rich and I have to make our way down again on October 26th for the second infusion.
Therefore we are asking again: if there is ANYONE out there who has frequent flier miles that they would be willing to donate, or money towards the PayPal account for our next and final trip down to TX, we thank you in advance. If you have left a comment on the blog that you'd like to donate (I believe there is a Cara out there who said she would like to), I am having trouble finding you! So please, email me at: RebekahFurey@mac.com to discuss any details. Again, we thank all of you for sending positive vibes, opening your hearts, and your pockets. My health and semi-normal life has continued because of each and every one of you.
Thank you again.
Sending Love and Light,
B.
Attempting another treatment to Texas is exciting (another chance for this treatment to work) but a bit financially stressful. Therefore I just wanted to thank everyone who has sent their positive vibes, opened their hearts, and have also opened their wallets for us to make this trip possible. I am so humbled, grateful, and words can never express how appreciative I am for the kindness of so many individuals out there.
Originally we had hoped Corporate Angels which is a wonderful organization that flies cancer patients for free would be able to score us a flight. However, they were unable to find a flight in the areas of our departure and arrivals in the days we need for treatment. So, the wonderful and talented Ms. Liz Masson, generously offered her wonderful miles to me and Rich -- and we have our first flight booked!!
Ms. Jola & Ms. Liz
Therefore we had to make the decision to stay over Wednesday night, something we were not sure how we were financially going to be able to handle. Luckily, some amazing and ridiculously generous people, in addition to Ms. Masson and her miles, donated money in the last two weeks and we will just have enough to stay at a hotel Wednesday, eat, and enough for cab fare. I am so incredibly lucky for these people as they are making this trip possible.
So! Huge, huge thanks to: Ms. Judy Kilty, Ms. Alyson Weissman, Ms. Barbara Chambers, Ms. Katy Cooper, Mr. James Oheir, Ms. Alannah DiBona, Ms. Courtney Forsberg, Ms. Linda Davidson, Ms. Ruth Henry, Mr. Chris Carr, and Ms. Michelle McDonald. Without all of you, and Ms. Masson, Rich and I would not make this trip, nor would I receive this form of treatment. I will be forever grateful for all of you and your hearts.
The last thing I absolutely hate to do on my blog is ask for any charity. However, the trips to Texas this fall were very last minute as we didn't know when my cells would be ready. With this first trip booked and ready to roll we are now attempting to figure out the second part of this treatment. To complete this round Rich and I have to make our way down again on October 26th for the second infusion.
Therefore we are asking again: if there is ANYONE out there who has frequent flier miles that they would be willing to donate, or money towards the PayPal account for our next and final trip down to TX, we thank you in advance. If you have left a comment on the blog that you'd like to donate (I believe there is a Cara out there who said she would like to), I am having trouble finding you! So please, email me at: RebekahFurey@mac.com to discuss any details. Again, we thank all of you for sending positive vibes, opening your hearts, and your pockets. My health and semi-normal life has continued because of each and every one of you.
Thank you again.
Sending Love and Light,
Wednesday, September 21, 2011
One of the Lucky Ones
Life has been full of smiles as of late. We've received notice from Texas that my second round of the EBV+ Trial with the arm for relapsed and refractory patients is ready for me! I will be receiving the first infusion on October 12th and then my second the October 26th.
So, a favor to any of you who are able: We are scrambling a bit financially in regards to the flights, as the infusions are coming up. Ideally, we'd love to have my partner to go with me as I'll be flying in and out of TX in one day and the pre-meds cause a bit of whooziness. But for now, we're looking for flights just from PHL to Houston, TX, just for me. So although I hate to ask for any bit of charity, if you know of any charities, or anyone willing to use frequent flier miles to help out this cancer patient, let me know! If you'd like to chip in just a few dollars you can always donate to the paypal account listed on the screen. (If you would like to donate your miles in any way, on either date, for myself or my partner, please email me at: RebekahFurey@mac.com so we could possibly discuss details) We obviously would be forever in debt to anyone who could help us, and thank you in advance for just reading this small paragraph.
But on to to the good stuff! My ESR/SED rate remains unchanged this week, it is holding in the 40's, and we are thrilled about that. My weight continues to fluctuate between 126-128lbs, I am hoping as I contiue to gain now it is due to muscle mass! :) And the last piece of wonderful news is that since the infusions in TX are ready to go, we will scan 8 weeks post the second infusion. This means that I will receive a PET/CT scan sometime during December, which will be the longest period of time my body has ever had time off from a scan since 2006 (pretty cool if you ask me). If I begin to have any symptoms, drop weight, or my ESR sky rockets we will move the scan date closer. However, O'conner says there is no need for a check-up since Dr. Bollard down in TX will be seeing me, and we can follow the EBV trial protocol-schedule of scan dates.
All in all, this is wonderful, wonderful news. I will have the entire semester off from toxic-treatment (unless anything pops up on the radar), and we are giving Texas a second go and hoping this arm of the trial will do some damage to those pesky cancer cells. In the midst of my last year of graduate school, new cancer treatments/vaccines, and just life in general I can easily say that I am honestly one of the lucky ones, and life could not be more sweet these days. As always, I thank all of you for your comfort, support and love and I hope you're all enjoying the change of seasons and life as much as I am these days.
As always, sending each and every one of you tons and tons of love & light :)
B.
Friday, September 2, 2011
Celebration-Rollercoaster
Two weeks ago my lovely entourage and I (my mothers: Darlene and Diane, and my partner: Rich) took the trip to NYU for my PET/CT scan to determine if this EBV positive trial was/is working that I received down in Texas.
At the time of the scan a few hiccups occurred: 1) O'conner was out of the office 2) my veins refused to cooperate during the CT scan, and only a PET scan was given during this time. Therefore, we were a bit unsure about the results. When I looked over the scan there was progression, but very minimial, and we only had the PET scan to go off of for information -- never a good thing for a refractory hodger, especially since this EBV trial is known to cause inflammation due to the killer T-cells that attack my tumors.
So, for two weeks my oncologist teams (O'conner, Zain, Bollard) discussed what should be done. Yesterday, my entourage and I met up again, with O'conner returning from his travels and all doctors giving their two cents. I was prepared to start Revlamid, or hop back on a previous treatment (SAHA) due to the fact that there was progression; however, my team had a different thought process.
O'conner's team is one of my favorites because they always see their refractory patients in the BIG PICTURE. They take into account how the patient is feeling, their symptoms, their blood counts, and then the numbers on the pages of scans. In three out of four areas I was excelling beyond all expectations. My blood counts are the highest they've been in five years. I haven't held onto weight like this since before my diagnosis, and I feel on TOP of the world these days with energy. And when you see me in person, there is no denying that -- and O'conners team has been sitting court-side.
So, after a quick run down we all decided that the best thing to do would be to milk this oh-so-good-feeling, out for as long as humanely possible. On top of that, we really haven't given the EBV+ vaccine the best shot in the world, and we are looking to possibly do a second infusion in the next two months (if my next round is ready down in Texas). Therefore, the conclusion is to wait and not receive any toxic treatment.
After the news two weeks ago, I feel as though these last scans from relapse to this recent visit has been an incredible rollercoaster of the unknown. Is there disease? Is there not? Is that inflammation? Is the treatment working? Wait, if we have progression, why aren't you treating it? Without a CT, is that really progression? There are so many questions, and a lot of people take time and energy analyzing all of it, but this is where I get to step back and let all of those questions fall by the way side. Sometimes, we don't need all of the answers. Sometimes, it's okay to enjoy the unknown if we feel good. And that is what I plan to do.
If you are going to tell a Refractory Hodger that they do not need to receive treatment for 2-3 more months, THAT is a celebration, whether there are 5 questions or 500, the conclusion is the same. We will wait, I will enjoy this time without treatment, and we celebrate in the fact that I have almost a whole semester without having to worry about treatment. It is something to cherish.
It has taken time and experience to enjoy these periods without anxiety ridden thoughts. As others may have anxiety over: is the disease is growing or not, or question if a day of fatigue is because of cancer or just because it is too much. But here, in our neck of the woods you will find me and my lovely entourage basking in the glory of this 'wait and watch period' without treatment, and enjoying every single moment of these non-treatment days... for as long as we can.
From now till november we will track my ESR levels, and meet with O'conner in two more months as a check-in to reassess. But in the mean time -- we celebrate!
Love and light to all of you my loves,
B!
At the time of the scan a few hiccups occurred: 1) O'conner was out of the office 2) my veins refused to cooperate during the CT scan, and only a PET scan was given during this time. Therefore, we were a bit unsure about the results. When I looked over the scan there was progression, but very minimial, and we only had the PET scan to go off of for information -- never a good thing for a refractory hodger, especially since this EBV trial is known to cause inflammation due to the killer T-cells that attack my tumors.
So, for two weeks my oncologist teams (O'conner, Zain, Bollard) discussed what should be done. Yesterday, my entourage and I met up again, with O'conner returning from his travels and all doctors giving their two cents. I was prepared to start Revlamid, or hop back on a previous treatment (SAHA) due to the fact that there was progression; however, my team had a different thought process.
O'conner's team is one of my favorites because they always see their refractory patients in the BIG PICTURE. They take into account how the patient is feeling, their symptoms, their blood counts, and then the numbers on the pages of scans. In three out of four areas I was excelling beyond all expectations. My blood counts are the highest they've been in five years. I haven't held onto weight like this since before my diagnosis, and I feel on TOP of the world these days with energy. And when you see me in person, there is no denying that -- and O'conners team has been sitting court-side.
So, after a quick run down we all decided that the best thing to do would be to milk this oh-so-good-feeling, out for as long as humanely possible. On top of that, we really haven't given the EBV+ vaccine the best shot in the world, and we are looking to possibly do a second infusion in the next two months (if my next round is ready down in Texas). Therefore, the conclusion is to wait and not receive any toxic treatment.
After the news two weeks ago, I feel as though these last scans from relapse to this recent visit has been an incredible rollercoaster of the unknown. Is there disease? Is there not? Is that inflammation? Is the treatment working? Wait, if we have progression, why aren't you treating it? Without a CT, is that really progression? There are so many questions, and a lot of people take time and energy analyzing all of it, but this is where I get to step back and let all of those questions fall by the way side. Sometimes, we don't need all of the answers. Sometimes, it's okay to enjoy the unknown if we feel good. And that is what I plan to do.
If you are going to tell a Refractory Hodger that they do not need to receive treatment for 2-3 more months, THAT is a celebration, whether there are 5 questions or 500, the conclusion is the same. We will wait, I will enjoy this time without treatment, and we celebrate in the fact that I have almost a whole semester without having to worry about treatment. It is something to cherish.
It has taken time and experience to enjoy these periods without anxiety ridden thoughts. As others may have anxiety over: is the disease is growing or not, or question if a day of fatigue is because of cancer or just because it is too much. But here, in our neck of the woods you will find me and my lovely entourage basking in the glory of this 'wait and watch period' without treatment, and enjoying every single moment of these non-treatment days... for as long as we can.
From now till november we will track my ESR levels, and meet with O'conner in two more months as a check-in to reassess. But in the mean time -- we celebrate!
Love and light to all of you my loves,
B!
Friday, August 19, 2011
And so it goes...
...life is easier on me, most of the time.
As always, I so appreciate the positive vibes and energy you all send my way during scan time. I completely believe in those healing vibes and since I'm feeling so wonderful physically, I know that my body IS in fact receiving them.
Although my blood counts, weight, and body show zero signs of symptoms or cancer related issues -- the scan did not show what we had hoped. There is definite progression of nodes, a few new nodes, ranging from 1-3cm's and SUV's between 7-9. Nothing to be too worried about, but nothing to celebrate either.
Our next steps are to have Dr. O, Dr. Zain (NYC) and Dr. Bollard (Houston) discuss if this is too much progession to attempt a different arm of the EBV+ vaccine down in Texas. We won't know for sure what the next steps will be for another week; however, we have a plan A, B and C as always.
Although I'm back in the ring, I have all the confidence in the world through my oncology teams, my family, my partner and I that this will only be another small bump in the road and life will continue on to be semi-normal as I approach my last year of Grad School, and finish off my long awaited internships.
Will update when I have more information and a plan is in place.
Sending all of you love and light, as always.
And remember to hug the ones you love today, and everyday.
xoxo,
B!
As always, I so appreciate the positive vibes and energy you all send my way during scan time. I completely believe in those healing vibes and since I'm feeling so wonderful physically, I know that my body IS in fact receiving them.
Although my blood counts, weight, and body show zero signs of symptoms or cancer related issues -- the scan did not show what we had hoped. There is definite progression of nodes, a few new nodes, ranging from 1-3cm's and SUV's between 7-9. Nothing to be too worried about, but nothing to celebrate either.
Our next steps are to have Dr. O, Dr. Zain (NYC) and Dr. Bollard (Houston) discuss if this is too much progession to attempt a different arm of the EBV+ vaccine down in Texas. We won't know for sure what the next steps will be for another week; however, we have a plan A, B and C as always.
Although I'm back in the ring, I have all the confidence in the world through my oncology teams, my family, my partner and I that this will only be another small bump in the road and life will continue on to be semi-normal as I approach my last year of Grad School, and finish off my long awaited internships.
Will update when I have more information and a plan is in place.
Sending all of you love and light, as always.
And remember to hug the ones you love today, and everyday.
xoxo,
B!
Wednesday, June 8, 2011
And just like dust, I rise.
There have been various reactions to the recent news of relapse, and I just wanted to write a bit before I head down to Texas to receive my EBV + Vaccine through Baylor College of Medicine in Houston.
(EBV+ Vaccine: on ClinicalTrials.gov: click here)
To be honest, after returning from friends in CT after Memorial Day weekend, I was in a definite 'funk' from receiving the news, letting it set in, and digesting it. I don't want any other cancer warrior to think I am bubbly and optimistic twenty four seven even after receiving such disappointing news. There is a huge difference between being 'happy' and being 'grateful.' The gratefulness piece is always in me. Always. However, it was tough to get out of bed the last few days and to look at the bright side of things when the reality that more treatment (if this vaccine doesn't do the job) will continue in the future. I think it's important for those that are ill or receive hard news, that we are still gentle with ourselves. In the beginning I used to repress these feelings and ignore them, realizing they would only come out later to bite me in the butt. Now, if I feel down for a few days, I let myself. Usually after a week or two, I find myself back on my feet again and moving. I am no superwoman -- none of us are, so I believe its truly important to let yourself 'be' in these types of situations.
Next, there have been a lot -- and I mean A LOT of people who are deeply disappointed and upset. I do appreciate all of your words of support, emails, comments, phone calls and texts. I still believe one of the main reasons I am still here is my network of close-knit family and friends and even strangers that shower me with kindess and love every opportunity that I'm in need. But I want to assure you, that there are a lot of things we should be grateful for after receiving this news.
So, beings another grateful list for you to view :)
In all other areas of my life, things are going swimmingly. So for now. We focus on these positive factors. We, I am grateful for all of these things (especially this good-looking, brain-ack family of my mine!)
In other news, I wanted to shift the focus to those in the trenches at the moment. As they definitely need more of your positive waves of support and love than I do.
I send my love to all of you struggling, fighting, overcoming, in the trenches, surviving, pursuing life or treatment, and know I think of all of you, very often -- and lots that are not listed here. Please remember to hug the ones you love, very tightly today. And to attempt to see the gratefulness in your life, your loves, and yourself.
I leave for Texas June 17th, receive my first infusion on the 18th.
My second infusion will be July 1st. We scan eight-weeks, post second infusion (Mid-August).
Love & Light,
B.
(EBV+ Vaccine: on ClinicalTrials.gov: click here)
To be honest, after returning from friends in CT after Memorial Day weekend, I was in a definite 'funk' from receiving the news, letting it set in, and digesting it. I don't want any other cancer warrior to think I am bubbly and optimistic twenty four seven even after receiving such disappointing news. There is a huge difference between being 'happy' and being 'grateful.' The gratefulness piece is always in me. Always. However, it was tough to get out of bed the last few days and to look at the bright side of things when the reality that more treatment (if this vaccine doesn't do the job) will continue in the future. I think it's important for those that are ill or receive hard news, that we are still gentle with ourselves. In the beginning I used to repress these feelings and ignore them, realizing they would only come out later to bite me in the butt. Now, if I feel down for a few days, I let myself. Usually after a week or two, I find myself back on my feet again and moving. I am no superwoman -- none of us are, so I believe its truly important to let yourself 'be' in these types of situations.
Next, there have been a lot -- and I mean A LOT of people who are deeply disappointed and upset. I do appreciate all of your words of support, emails, comments, phone calls and texts. I still believe one of the main reasons I am still here is my network of close-knit family and friends and even strangers that shower me with kindess and love every opportunity that I'm in need. But I want to assure you, that there are a lot of things we should be grateful for after receiving this news.
So, beings another grateful list for you to view :)
- I feel incredible. Emotionally, this is a huge hit. But physically, I have NEVER in the last five years felt that I have so much energy, muscle, weight, and amazing health other than the cancer. Everything else in my body is working like clock work, my counts are great -- basically normal, and this is something to be thankful for in all realms because if I need to face another four years of treatment or more again, I feel ready, physically.
- I have not received any treatment since November. Although I am heading down to Texas, this form of treatment is a vaccine, I am receiving back my own blood with a vaccine in it. This is not chemotherapy, radiation, or anything toxic. Most likely, since my next scan will be in September, I will not receive any further toxic treatment till October or even November. This means I have just gone through one solid year without any form of treatment, a milestone if you asked me last year I never thought I would be able to accomplish or experience. Having a solid year of 'nothing,' has strengthened my endurance, stamina, drive, body, and mind. I am grateful for this year. I am grateful for the break I had, as more clinical trials have opened as well.
- I have accomplished more in these last six months, then I'd say most would have :) I traveled with my three dear friends and brother to the most gorgeous place in the world -- Greece! And had the time of my life, I overloaded last semester and finished all of my coursework for this degree, transferred all of my classes and finished up incompletes from Lesley U, and now... once August hits, will just be able to focus on my clinical hours. I have found a best friend in a man who is ridiculously supportive of me, this illness, and my family. And I cherish every day I get to spend with him. I have traveled more to visit friends than ever before these last few months, and am enjoy my first summer without chemotherapy since I was twenty one :) I have formed new friendships at my new University and re-nurtured and reunited with old ones in Boston.
- I have very, very small disease. And this trial in Texas has shown wonderful, if not the best results I've seen in a trial that I've participated in so far. We are hopeful. We are hopeful. I am still, very hopeful.
- The remission. I achieved a remission: something none of us thought was possible. Knowing that it can and did happen makes room for this possibility in the future with the right combination of drugs. Remember: This disease is manageable. Warriors such as Adrienne, Zach, and Mike have done/did it for more than ten years. I'm barely coming up on five :)
- I look and FEEL healthy!
In all other areas of my life, things are going swimmingly. So for now. We focus on these positive factors. We, I am grateful for all of these things (especially this good-looking, brain-ack family of my mine!)
In other news, I wanted to shift the focus to those in the trenches at the moment. As they definitely need more of your positive waves of support and love than I do.
- Anne, it seems is facing her last two-three weeks of life. She has gracefully touched all of us in a way of speaking of death and dying that no one in my life has. Her acceptance, and even her wit has survived despite her body deteriorating over the last few months. Please keep her family in your thoughts.
- Andy, has ventured into Hospice. And with (mother) Kim and their two kids balancing their lives, and this illness, I can not even imagine how difficult things must be for them during these summer months. Please send love to the Keely's.
- Mike, just as I have relapsed after Treanda (Bendamustine) has found out that his cancer has returned as well. Mike and April now need to make difficult treatment decisions that compromises different aspects of Mike's quality of life and body. These choices are never easy, please send them waves of comfort as they make these difficult decisions for their entire family.
- Karin is gearing up (after four attempts) into her allo transplant in NYC. Karin and Craig have been awaiting this day for many months, we cheer and send large waves of hope and optimism that this form of treatment is successful! And that this couple survives a summer in the city!
I send my love to all of you struggling, fighting, overcoming, in the trenches, surviving, pursuing life or treatment, and know I think of all of you, very often -- and lots that are not listed here. Please remember to hug the ones you love, very tightly today. And to attempt to see the gratefulness in your life, your loves, and yourself.
I leave for Texas June 17th, receive my first infusion on the 18th.
My second infusion will be July 1st. We scan eight-weeks, post second infusion (Mid-August).
Love & Light,
B.
Monday, May 30, 2011
Relapse.
I write this with bittersweet tears, as I know all of you have cheered with me these last six months that I've held a remission. I received a Pet/CT for a six-month post remission scan on Thursday, and the news revealed shows two new nodes of 2cm with a SUV of 10-13. My disease is one sneaky sucker, and most of us were a bit shocked with this news: the caner is officially back, and relapse has occurred.
I have gained all my weight (and continue) and am at 135 (over my normal weight) no symptoms, nothing. Normally I am very in-tune with my results. However, with the disease very small and not spreading like wild-fire it might just be because its just beginning to grow back again.
My team, family, my partner and I were a bit caught off guard as I walked into that scan overly confident that my remission held. I haven't felt this good in years; however, I also haven't been so happy in my professional or personal life as I am now so that could contribute to this.
But all of this, every moment of it is bittersweet. Am I upset that this relapsed occurred? Absolutely. There were snapshots and flashes of the future that were in my head since the first words of remission -- and not that all of those are now thrown out the window. They're more or less put on a bit of pause, or viewed with caution. The bittersweetness is surrounding my entire family, loved ones, and friends. We are absolutely extatic that I acheived remission for six entire months. This: A) Gives us hope for the future B) Allowed me to gain my weight, strength (both mental and physical) back to where I was years ago. and C) Gave us six months of non-cancer festivities, such as me beginning an amazing relationship with a ridiculously supportive man, my brother and sisters graduations from college, finishing up all of my grad school course work, and just life in general. I have sucked the most marrow I could out of every day, and I don't regret anything from it.
So now -- this is me, signing back on -- we are back. (Feels like I'm signing back on to a radio/tv show, :) ). Another aspect of this relapse is the fact that my partner, came with me to receive this news -- with both of us preparing for another three months of remission. With the sudden hit, (and him with zero experience in the cancer world), he supported me beyond my expectations, communicating with my family and friends after the news, talking to my doctors, fetching food, drinks, and anything I needed, and then pushing me to go to CT for the holiday weekend to visit all of my college friends, as planned. With a confirming "we are now in this together," I couldn't (oddly enough) have asked for a better response or relapse now that this has occurred.
On top of speaking of a 'good time to relapse' Whether I was in remission or not, I was set to receive my EBV+ trial vaccine on June 17th and July 1st (that Marsha has been in! and others are not moving towards), in Houston. The timing could not be better, as we had this set up and nothing in my treatment plan has changed. So life, continues to be normal, and I continue to build my strength so I can battle it out when/if those heavy chemo's must reenter my life again.
Truth be told, I am shaken, and disappointed. I had visions of moving further away from home when I graduate next spring, visions of someday being a mom again (since my menstrual cycle is temporarily back) and visions of a healthy life again... however, I am extremely, extremely grateful and feel privildged to have had these six months as I know so many other refractory kids never have that opportunity -- it does not go unnoticed that so many of us go for years and years on treatment with hardly any break. Or those, such as Anne or Andy (who are now on hospice), or Chris and Zach (who have just recently changed their treatment again) are out there in the trenches every day. I see them, I see all of us, no matter what, and I hope it does not come off in this post that I am kevetching ;) in any way. I am grateful, for these moments. And I wish for all of us (in this refractory group) that they existed more frequently.
For now we focus on: me feeling physically well, and many options for the future...
I will definitely be updating information and anything else I can to contribute to Houston trial for those who would like more information, as it is definitely another avenue/option that many people who are positive are going towards, and many of Dr. O's patients are starting to be tested for as well.
Love & Light,
B.
I have gained all my weight (and continue) and am at 135 (over my normal weight) no symptoms, nothing. Normally I am very in-tune with my results. However, with the disease very small and not spreading like wild-fire it might just be because its just beginning to grow back again.
My team, family, my partner and I were a bit caught off guard as I walked into that scan overly confident that my remission held. I haven't felt this good in years; however, I also haven't been so happy in my professional or personal life as I am now so that could contribute to this.
But all of this, every moment of it is bittersweet. Am I upset that this relapsed occurred? Absolutely. There were snapshots and flashes of the future that were in my head since the first words of remission -- and not that all of those are now thrown out the window. They're more or less put on a bit of pause, or viewed with caution. The bittersweetness is surrounding my entire family, loved ones, and friends. We are absolutely extatic that I acheived remission for six entire months. This: A) Gives us hope for the future B) Allowed me to gain my weight, strength (both mental and physical) back to where I was years ago. and C) Gave us six months of non-cancer festivities, such as me beginning an amazing relationship with a ridiculously supportive man, my brother and sisters graduations from college, finishing up all of my grad school course work, and just life in general. I have sucked the most marrow I could out of every day, and I don't regret anything from it.
So now -- this is me, signing back on -- we are back. (Feels like I'm signing back on to a radio/tv show, :) ). Another aspect of this relapse is the fact that my partner, came with me to receive this news -- with both of us preparing for another three months of remission. With the sudden hit, (and him with zero experience in the cancer world), he supported me beyond my expectations, communicating with my family and friends after the news, talking to my doctors, fetching food, drinks, and anything I needed, and then pushing me to go to CT for the holiday weekend to visit all of my college friends, as planned. With a confirming "we are now in this together," I couldn't (oddly enough) have asked for a better response or relapse now that this has occurred.
On top of speaking of a 'good time to relapse' Whether I was in remission or not, I was set to receive my EBV+ trial vaccine on June 17th and July 1st (that Marsha has been in! and others are not moving towards), in Houston. The timing could not be better, as we had this set up and nothing in my treatment plan has changed. So life, continues to be normal, and I continue to build my strength so I can battle it out when/if those heavy chemo's must reenter my life again.
Truth be told, I am shaken, and disappointed. I had visions of moving further away from home when I graduate next spring, visions of someday being a mom again (since my menstrual cycle is temporarily back) and visions of a healthy life again... however, I am extremely, extremely grateful and feel privildged to have had these six months as I know so many other refractory kids never have that opportunity -- it does not go unnoticed that so many of us go for years and years on treatment with hardly any break. Or those, such as Anne or Andy (who are now on hospice), or Chris and Zach (who have just recently changed their treatment again) are out there in the trenches every day. I see them, I see all of us, no matter what, and I hope it does not come off in this post that I am kevetching ;) in any way. I am grateful, for these moments. And I wish for all of us (in this refractory group) that they existed more frequently.
For now we focus on: me feeling physically well, and many options for the future...
I will definitely be updating information and anything else I can to contribute to Houston trial for those who would like more information, as it is definitely another avenue/option that many people who are positive are going towards, and many of Dr. O's patients are starting to be tested for as well.
Love & Light,
B.
Tuesday, May 17, 2011
Catch me if you can...
As the spring semester wrapped up, my family and I were able to celebrate my little brother's graduation: all with good health, and amazing smiles. This is just a taste of my upcoming, traveling, summer. In the next month, I will be in several different states. So, catch me if you can... more pictures, soon :)
This coming weekend: Boston!
Next week: NYC, Ian Axel Concert + (6 month) PET/CT scan at NYU
Memorial Day Weekend: CT for a college reunion and to celebrate Max's first birthday!
June 17th: Houston/EBV Trial
June 25th: Dispatch Concert in Boston, then flying out to Chicago for a wedding.
July 1st: Houston/EBV Trial
Phew. My head is spinning just thinking about all of this. But, I can't wait for every second of it :) Also a huge, huge, HUGE thank you and ridiculous love and gratefulness this month go to my Uncle Jay, Aunt Bob, Thel and Wendy and Alison for financial help in transportation. I can never thank you all enough for your help.
Remember to hug the ones you love today,
who are both in hospice care at the moment.
Love and light to all of you,
B.
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