Today was a shitty day. Everyone is allowed to have those, one of those sad, draining, exhausting, just ready for tomorrow, kind of days. A lot of these days, I just write drafts and never post them for people to read. However, more and more individuals write me and ask me how can I be so 'positive' all the time? Which, do not get me wrong -- I love looking through life's lenses with a silver lining. But, if you take a twenty nine year old Refractory Hodgkin's patient, diagnose her with MDS, then rip her guts out by watching a bombing happen in one of her home towns she lived in for six years, where her heart has resided forever... anyone is allowed to have one of those days. And, I am far from positive twenty four seven. We are all human.
This week I had planned to visit my friends from Wheelock College (located in Boston), at one of their houses in CT. We had been planning this gathering for months and I was incredibly excited. Earlier in the week, I went and visited my family, got a lovely hair cut and caught up with my favorite stylist. And then, Thursday hit. Raging fevers of 102.8/9, night sweats where we had to change sheets over and over again and midnight showers so I could sleep for more than one hour. My cancer symptoms were raging. So, O'connor and team upped my dose of 100mg SAHA (my first personal choice at a lower dose) to 200mg of SAHA. Friday, and Saturday morning continued on this path, and finally... finally... Saturday late night, I found some relief. Today, I literally just laid in bed, looking up at my ceiling thanking my lucky stars that I could breathe, that I wasn't drenched in wet clothing, that my body wasn't covered in beads of disgusting sweat, and that for the first time in days I could eat. Today and the last few days were some shitty days. There is nothing eloquent about it. Tomorrow, we go in for blood work. Tuesday we meet with O'connor, and most likely due to my MDS and teetering HGB and platelets from last week at only 100mgs, I will need some form of transfusion. Fun.
This week will get better, it always does. But this is a reality check, for those who think I only see pretty pink bows and the beautiful things in all the pain. Most times, cancerville and now MDS world, are spent laying in bed, showering away fevers, taking temperatures, force-feeding food into your mouth, muscles and bones filled with chronic pain, and all over body nausea. So, although I have nothing wonderful to write today... I'm sharing with you, my first reaction to my MDS diagnosis when I did not know or have any information, I just knew something was wrong, in early March. Just remember, there are really really great, beautiful, wonderful days and I am always able to find something in each day to smile about -- but some days, are covered in shit.
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When I was eighteen I packed my bags and an overly wide smile to move to Boston where I attended undergraduate school for elementary education. I had planned this move since I was nine, when my family visited Harvard Square and I fell in love with New England, the people, being near the ocean, the crisp fall leaves and the possibilities that it could lead me towards. I entered college wanting to leave some really ugly pieces of my child hood and my home town behind me. It was new, and I felt on top of the world.
When I (and my entire family) huffed it up there from Bucks County, PA to move me into the dorms, I ran across the quad, in front of Peabody hall, towards my new roommate: Jen. Luckily she did the same as we encircled our arms around each other and jumped like naive (and happily-so) euphoric little school girls that just found their best friend and did not have a care in the world. Not only did we find friendship within each other, and other life-long amazing friends too. But we were passionate and had played basketball since childhood; in turn, we joined the DIII (ever losing) team at our school. Two months into the season and the first semester of school our coach held our practice outside, in the cold rain. We were to run as I recall a mile or so around the soccer fields, in the mud, with cold rain coating our bodies, and chilling us to the bone.
One week later, and weird, off the wall symptoms that only my college friends could understand, I was diagnosed with my first life threatening disease: MCD, Minimal Change of the Kidney. My grandmother swears that my kidneys stopped functioning on their own because of that basketball practice. To this day, my Nan still curses the ground that my old basketball coach walks on.
Two years later, hospitalizations, meds, high dose prednisone and cyclosporin, attending my first two years of college in Boston, I somehow hit a remission. It was out of the blue and no one knew why I was cured or why all of a sudden my kidneys started working again. It amazed me how much I changed from that young woman who ran across the quad to the week after the most grueling practice. I also (in hindsight) never received at PET/CT scan.
Two years later, at the age of twenty one I moved (again) after graduation. This time, I had my eyes set on Florida. I grew up near the Jersey shore with my cousins every summer. My Pop showed me (his first of eleven grandchildren) how to ride a bike on the Lavallete boardwalk. My Nan taught me how the sea, the salt water, the sand healed. The sun and the beach were calling me and so was my first teaching job. I was an enthusiastic, less naive, but eager young woman. I boxed up my 200 children's books I had been hoarding for years, my bathing suits, lesson plans, and an infectious smile as I arrived in Jacksonville, FL. Here, I was the youngest teacher in a large school that pushed major literacy and curriculum boundaries, exposed my students to as many forms of culture, literature, and even holiday cheer (being one of the two Jewish teachers) in the school. I spent my days in the classrooms, and weekends building fires on the beach, and throwing footballs in the ocean. I overworked myself for every kid in my classroom, changing up my roles with a flip of a coin from teacher to counselor and even more -- and I loved and ate up every single fucking second of it.
This was the life I had planned. I left behind my ugly childhood in Bucks County, Pa. I left behind my MCD in Boston, and now Florida welcomed me with open arms. During holiday break after celebrating getting through half of my first year of teaching I visited my uncle. I pointed out a small bump on my collar bone. Two weeks later I was diagnosed with Hodgkin's Lymphoma. The last lesson I taught was about the human body, and how some of our cells aren't good cells and that's why we need tylenol or treatment (or in my case seven years of chemotherapy). I left my 200 books, my 28 students, and my heart. I never entered another classroom as a teacher again.
Seven years later, I am still fighting the same disease but a lot has changed. My smile remains, however I'm pretty sure my nativity unfortunately has faded with the years of relapses. With time, as you face a chronic/terminal disease you begin to understand how incredibly short this life is. This past week I truly reflected back on my life thinking "What would I want to do that I really haven't done yet?" And to be honest, I have packed in so much within the last seven years that I really, truly know that I have accomplished (Masters Degree, Counseling Internship, Teaching, Healthy Relationships, Yoga, Traveling) so much, so so much. I am extremely proud of myself for never taking one day for granted. Which is something I will always pride myself in, because, you never know what is around the corner.
(I know this next part might be difficult to read, but please remember: We are all stronger than we think, and it will be okay).
At twenty eight I moved with my partner to Montclair, New Jersey. We packed up my life in Bucks County, PA, this time, leaving behind good friends, family, amazing grad school friends, a beautiful apartment, memories of a Masters Graduation, a counseling internship, clients, an incredibly accomplished life. My partner and I welcomed Montclair with open arms, being near my cousins and grandmother. New professional opportunities, closer to my medical team, a gorgeous apartment and a shorter commute for my love. Life was again and still does move forward, it always will (trust me). Three months after moving and unpacking our new lives, small red flags began to rise. No longer being naive, a bone marrow biopsy was requested. One week later I was diagnosed with early, low-risk stage of Myelodysplastic Syndrome (MDS).
We now begin to strategize treatments for the future around HL and MDS, and begin to research paths for an allo transplant in the distance future. This hasn't changed everything as far as a treatment plan, it just limits a lot of treatments. We do not have as many options, and an allo will now be on our radar.
Like always, we take one step at a time. However, this time as I look at myself without a smile, and too much medical information for any non-med student to know at twenty nine, I find myself yearning for those days... those days of nativity and youth. I find myself thinking, jesus, I must've really won the jackpot: three life threatening diseases before the age of thirty. Lucky me.
Yeah, we're allowed to have shitty days.
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Sending Light,
B.
Sunday, April 21, 2013
Tuesday, April 9, 2013
A New Chapter: MDS
This has probably been one of the more difficult posts I've had to write. Difficult for many reasons, but mostly because of the dissapointment and a little heartbreak that it's caused some people. Even though, as I explain as best as I can, it shouldn't. So, I will try my best (try to stay patient with me) as I struggle through this post.
After you are in the cancer world for a while, there isn't much that shocks you anymore. Some people may say you're jaded or tainted, but I think as time moves on we have a better comprehension of the medical world. We understand that there are always options, there are second and third opinions to search for, nothing is cut and dry, nothing is black and white, we live in a gray gray world. So when something we weren't prepared for comes our way, at least for me, it takes a bit to digest but then as information is collected, we soon form plans and we move. We move slowly, as one of my favorite caretakers in the HL world has told me. We move slowly. And we do, even with this piece of information.
After seven years of chemotherapy your body can take quite a beating. There are several things that can happen to an individual with that amount of chemotherapy. You can develop secondary cancers depending on your previous treatments. Your lungs can start struggling, your heart may not be as strong, your bones can begin to deteriorate. It's a scary secondary diagnosis world out there -- even for someone as young as I am. Luckily, none of these diagnoses have happened at this time.
However, there is something that has occurred. Right after Florida, I received a bone marrow biopsy from O and my medical team. Previously, on the Revlimid my Hemoglobin (red blood cell production) was taking a nose dive, and then performing at normal levels. Something was off. Which is why we went forward with the bone marrow biopsy. The biopsy revealed abnormalities. Some of them which could have been caused by the Revlimid, but one that indicated I have early stages of Myelodysplastic Syndromes also known as MDS. In many ways it is considered a disorder that if not treated could lead to leukemia, if you have an aggressive stage. Luckily, I am at an extremely early and low-risk stage of MDS.
After seven years of chemotherapy, my bone marrow has taken a bit of a beating, and it is showing dsyplastic abnormalities. Which is why this is considered Secondary MDS, because it is caused by the amount of chemotherapy I've had over the years. Robin Roberts, if you've followed her also had MDS due to her previous chemotherapy; however, I believe hers was more aggressive.
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Today I'm going to leave you all with a small grateful list. I write one everyday.
1. Sunshine
2. Tylenol and pain medication
3. New Smoothie Recipes
4. My Cousins, I love my cousins
5. Poetry, more specifically today, Charles Bukowski.
Sending so much love to you and yours,
B.
After you are in the cancer world for a while, there isn't much that shocks you anymore. Some people may say you're jaded or tainted, but I think as time moves on we have a better comprehension of the medical world. We understand that there are always options, there are second and third opinions to search for, nothing is cut and dry, nothing is black and white, we live in a gray gray world. So when something we weren't prepared for comes our way, at least for me, it takes a bit to digest but then as information is collected, we soon form plans and we move. We move slowly, as one of my favorite caretakers in the HL world has told me. We move slowly. And we do, even with this piece of information.
After seven years of chemotherapy your body can take quite a beating. There are several things that can happen to an individual with that amount of chemotherapy. You can develop secondary cancers depending on your previous treatments. Your lungs can start struggling, your heart may not be as strong, your bones can begin to deteriorate. It's a scary secondary diagnosis world out there -- even for someone as young as I am. Luckily, none of these diagnoses have happened at this time.
However, there is something that has occurred. Right after Florida, I received a bone marrow biopsy from O and my medical team. Previously, on the Revlimid my Hemoglobin (red blood cell production) was taking a nose dive, and then performing at normal levels. Something was off. Which is why we went forward with the bone marrow biopsy. The biopsy revealed abnormalities. Some of them which could have been caused by the Revlimid, but one that indicated I have early stages of Myelodysplastic Syndromes also known as MDS. In many ways it is considered a disorder that if not treated could lead to leukemia, if you have an aggressive stage. Luckily, I am at an extremely early and low-risk stage of MDS.
After seven years of chemotherapy, my bone marrow has taken a bit of a beating, and it is showing dsyplastic abnormalities. Which is why this is considered Secondary MDS, because it is caused by the amount of chemotherapy I've had over the years. Robin Roberts, if you've followed her also had MDS due to her previous chemotherapy; however, I believe hers was more aggressive.
MDS for those who aren't in the medical field is when your stem cells (which produce your white/red blood cells and platelets) aren't able to fully produce to its evolved level. Which means you may not have enough red blood cells working in your body, which has been my case in the past. Right now, fortunately, all of my counts are normal since discontinuing Revlimid. However, I have a very rare form of MDS called Refractory Anemia with Ringed Sideroblasts (RARS). This means that I have less than 5% of potential leukemia blasts (precancerous cells) in my bone marrow (I have zero), and more than 15% of ringed sideroblasts (I have 18%). Luckily, sideroblasts are do not turn into anything. They are just abnormal cells that do not fully produce into your red or white blood cells (that need to, which is why I'm lacking them), but they are not negative or positive. They are just the percentage that should be evolving into healthy cells that aren't. So, 18 percent of my stem cells aren't using their full potential at the moment.
Within the last few weeks, we have met with Columbia's MDS specialist and discussed a lot of overwhelming information which I will do my best to explain and discuss with all of you over time. For now though this is not a crisis or alarming diagnosis, please know that. I am in a very, very early stage and very, very low risk. MDS low and high risk is determined by three factors: How your blood counts are doing (off treatment), Chromosome damage, and how many "Blasts" you have in your bone marrow. Right now, I have none of these factors which makes me low-risk MDS. Dr. Raza, the MDS specialist, stated that if I was a normal MDS patient and was not looking at anymore chemo, that we would not do anything at the moment. We would just watch and wait, for years probably. MDS at this stage is looked at as pre-cancerous cells, and for some they never form, at all. For others, they do. If they do, an allo-transplant is the cure.
Ironic huh? The one treatment I have been avoiding for my Hodgkin's Lymphoma for years would potentially cure the HL and the MDS. Life certainly knows how to make us laugh sometimes.
Since I am NOT a normal patient, this is what this diagnosis means for me at the moment:
Short Term:
- My Red Blood Cells will probably give me trouble during treatment, this will mean I need transfusions (hopefully not too often), but I need to be prepared.
- We will also attempt Red Blood Cell Booster Shots to help my Red Blood Cells
- We have to avoid "hard chemotherapy" (Bendamustine, ICE, GND, ect.) Any form of therapy that is not targeted and is a 'stem cell chemo killer,' we can no longer utilize as treatment.
- Having MDS makes me ineligible for some clinical trials, and crosses other hard chemotherapies off of our list. The result: we will not have as many options as we once had before this diagnosis and have to be more careful
- We will continue on with the treatments we do have, just as we have been to treat the HL. At the moment we will revisit SAHA at a baby dose. SAHA is also a management treatment for MDS.
- We are researching for future allo-transplant treatments, now. We are so grateful for all the donations that we've recently received thus far. If you would like to help us travel to Seattle and other cancer facilities for us to continue our research and where a potential future transplant could take place. Please read this post: click here. Or look to your right and click on the "Donate" button under "Donation to Treatment Travel."
Long Term:
- We are hoping we will be able to continue with non-stemcell chemo killer treatments for as long as we can. This could be a year, two years, or more.
- We will be balancing killing the Lymphoma with being gentle with my blood cells. The tricky part will be to treat the HL but not let my red blood cells go too low. This might be easy or difficult, we won't know until we start this first treatment.
- An Allo-transplant has always been in the far off distance for me as the ultimate last option for my Lymphoma. I have wanted to exhaust ALL options for my HL before jumping into that boat. An Allo (donor cell transplant) at this time will now be on the radar. We will be doing our research this summer and preparing as much as we can with information, cancer facilities, medical teams, and clinical trials. We want to be prepared, informed, and educated.
- The Allo can potentially treat and cure both my HL and MDS. It would give me new bone marrow (a new healthy immune system), and rid this body of disease. However, it is a risky procedure that has concerning mortality rate, and I've watched many other friends still relapse after this long, grueling, procedure that is months to years of recovery.
- There will come a point when my cells can no longer handle chemotherapy, a point when my red cells may not recover during treatment. We do not have a clear idea when this day will come, but when it does this will signal that we have to being prepping for the allo-transplant. Hopefully it is not for a few more years, but we will be ready no matter when it comes.
So, my friends. I realize that this is an overwhelming amount of information for all of you to read. As stated before, it has been difficult to write as I do not want to alarm anyone. For now, we continue just as we did before the diagnosis. Ultimately, the diagnosis does not change our path or course of treatment it just gives us some limitations and pieces of information to help us as we move forward.
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Lots of people at this point in time when there are bumps in the road or a new challenge ask me: What can I do? And this time -- I have an answer. Think about being a stem cell/bone marrow donor. Being a donor is not an invasive process at all. When you donate, it is literally just like taking blood. There is no surgery, no one digs into your bones, no one punctures your bone to get into your bone marrow. It is nothing like that at all. You literally, will be giving blood -- and a machine will separate your stem cells from your blood. That is it! So, think about this. It could potentially save my life, or someone else's.
Register online here:
Easy as one, two three. If you read this blog, and are healthy. I ask you to please, consider registering. When/if you do, I'd love to hear about it in the comments section. Let's start a small, "B movement." for donors if we can.
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Tomorrow I meet with O'connor and team to begin to discuss new treatment protocol of SAHA. Our hope is little to no side effects, strong red blood cells, and an April filled with beautiful sunshine. And we will move slowly, never hurry, and continue on.Today I'm going to leave you all with a small grateful list. I write one everyday.
1. Sunshine
2. Tylenol and pain medication
3. New Smoothie Recipes
4. My Cousins, I love my cousins
5. Poetry, more specifically today, Charles Bukowski.
Sending so much love to you and yours,
B.
Thursday, March 28, 2013
Transplant Meetings & Flight Donations
Rich and I are planning an informative allo-transplant meeting at the best transplant facility in the world. We want to do some research, become more informed with allo (donor) transplants, and familiarize ourselves with the types of transplants and the protocols associated with them. We want to stay ahead of the game, dot our I's and cross our T's when it comes to the future. To do this thoroughly we need to go to the Fred Hutchinson Cancer Research Center in Seattle, Washington.
We are hoping to make this trip in mid to late June and are looking for the amazing kindness of strangers and friends to possibly donate two round trip tickets/their frequent flyer miles, from Newark to Seattle this summer. If you cannot donate an entire flight, but would like to help out in someway when we do go to Seattle, feel free to click on the paypal account to your right. (scroll down the page, and look to the right of the blog, where you see "Donations to Treatment Travel" and click on the big yellow button that says DONATE!) Every penny helps -- trust me.
If you know of anyone, or you yourself could possibly consider donating.
Please email me at: RebekahFurey@mac.com
We unfortunately will not be able to book flights for three more weeks due to figuring out work and treatment schedules. But we are hoping to figure out the logistics ahead of time.
Also, if you have been treated at the Hutch for an allo-transplant, I would love to personally hear from you. Just a small email (email address above) would be incredible, as I would really appreciate anyone who could share personal experience.
I thank you in advance everyone, those who send their love, positive energy, and so much more. And to those who even consider or think about this donation, I sincerely cannot even begin to thank you for your generosity, huge heart, and the kindness that lays within you.
Sending Love,
B
We are hoping to make this trip in mid to late June and are looking for the amazing kindness of strangers and friends to possibly donate two round trip tickets/their frequent flyer miles, from Newark to Seattle this summer. If you cannot donate an entire flight, but would like to help out in someway when we do go to Seattle, feel free to click on the paypal account to your right. (scroll down the page, and look to the right of the blog, where you see "Donations to Treatment Travel" and click on the big yellow button that says DONATE!) Every penny helps -- trust me.
If you know of anyone, or you yourself could possibly consider donating.
Please email me at: RebekahFurey@mac.com
We unfortunately will not be able to book flights for three more weeks due to figuring out work and treatment schedules. But we are hoping to figure out the logistics ahead of time.
Also, if you have been treated at the Hutch for an allo-transplant, I would love to personally hear from you. Just a small email (email address above) would be incredible, as I would really appreciate anyone who could share personal experience.
I thank you in advance everyone, those who send their love, positive energy, and so much more. And to those who even consider or think about this donation, I sincerely cannot even begin to thank you for your generosity, huge heart, and the kindness that lays within you.
Sending Love,
B
Friday, March 22, 2013
a whole new meaning
Birthdays have a whole new meaning when you have to fight so hard to get to them.
-- Jacinta Allen, caregiver/fellow friend
March ninth confirmed that I have survived and thrived on this earth for twenty eight years, as I entered my twenty ninth birthday. The weeks leading up to this celebratory week were ones filled with exhaustion, frustration, fatigue, weight loss, low counts, anemia, fear, anxiety, instability, and disappointment. With blood counts changing results just as quickly as a flip of a coin, the numbers being different every day, Revlimid causing issues, high heart rates, low blood pressures, and my hemoglobin tanking... something had to give.
I had planned to vacation with my other half for a few days, and then have a girls weekend with my three best friends in Florida for my birthday. My amazing, generous, and kind Uncle Jay and Aunt Bob, generously allow me to go down to their property in March and receive a mental break -- that all of us, cancer patients so desperately need. For months, this was the break I had been holding onto. However, due to all the obstacles from this month, I feared that I would not have any energy to even enjoy myself in the sun with my love or friends. Sadness ensued.
Two days before we left, however, O made an important call. He took me off the Revlimid, I (between NYC and PA) received two units of blood, and was put on a high dose of steroids. And just like that, something gave. The shift began.
The week in Florida between the steroids, sun, seafood, people who I love more than life itself, smell of the ocean, being on the harbor, snorkeling, eating, eating, and more eating. Was literally one of the best weeks of my life this year. In fact, when I sat down with my NP this week she asked how my trip was, and through telling her I literally couldn't stop crying of grateful tears. As both her and Rich looked at me probably thinking, 'what the heck is this woman crying about?" It was just such an amazing trip and even thinking about it overwhelms me with appreciation and gratitude.
It has been a long road since June, between the relapse last summer, getting on Revlimid, discontinuing Revlimid, and now facing this shift. I soaked up every meal, every moment, every piece of sunshine, conversation, sound of music, and smile I possibly could. And with that, I started to regain some strength. With the steroids I gained five pounds in seven days. I'm so grateful that my friends helped me continue to eat (even though they felt stuffed most meals!). Because with every pound, I felt stronger, refreshed, re-energized, renewed. And with every day that was spent with my love and friends from childhood, I began to feel like my old self again. I firmly believe that so much of my recovery is always due to people who continue to lift me higher throughout all of this adversity, and for that, I am so grateful.
By the end of the week, I felt clarity and strength. Two visions I did not have in my mind before this trip. Which brings us to these next two weeks, and what is to come. Since returning from FL renewed, I met with O and the team on Wednesday for a bone marrow biopsy and blood tests. For this week, everything appears normal (this is wonderful); however, we know how easily things can change. We discussed next steps due to the fact that we both agree Revlimid just hasn't agreed with me and my quality of life, and we will have a PET/CT scan next week to see how large my tumor burden appears in my body. Currently (due to steroids for a week) my SED rate is 8, but most likely that will not hold for much longer.
Florida reminded me how to breathe again, how to take a step back when you are in the midst of hell and can not seem to figure a way to look elsewhere. Both my partner and I were beginning to dictate our lives only around doctors appointments, tests, meds, ect. We were losing sight of the mental piece, taking a breath, and stepping back to regain clarity over the situation. Luckily, I have wonderful family who encourages us to do just that.
Now I am five pounds heavier (117lbs!), filled with beautiful memories, energy, and the ability to make informed decisions over our next steps. We will PET/CT on Wednesday, and most likely begin a small-baby dose of Bendamustine to bridge to a CD30 Trial at Baylor College of Medicine, similar to the EBV+ Trial that I participated in over a year ago. I welcome these changes, am grateful to put Revlimid behind us, and look forward to deep breaths, more sunshine, and a calmness I haven't felt in quite a while.
For those who have been asking and keeping tabs on me, I apologize for this delayed post and thank you for checking in about my health. I am so grateful for the HL community and support. Here's to a spring filled with great change, deep breaths and smiles.
Sending Love,
B.
-- Jacinta Allen, caregiver/fellow friend
March ninth confirmed that I have survived and thrived on this earth for twenty eight years, as I entered my twenty ninth birthday. The weeks leading up to this celebratory week were ones filled with exhaustion, frustration, fatigue, weight loss, low counts, anemia, fear, anxiety, instability, and disappointment. With blood counts changing results just as quickly as a flip of a coin, the numbers being different every day, Revlimid causing issues, high heart rates, low blood pressures, and my hemoglobin tanking... something had to give.
I had planned to vacation with my other half for a few days, and then have a girls weekend with my three best friends in Florida for my birthday. My amazing, generous, and kind Uncle Jay and Aunt Bob, generously allow me to go down to their property in March and receive a mental break -- that all of us, cancer patients so desperately need. For months, this was the break I had been holding onto. However, due to all the obstacles from this month, I feared that I would not have any energy to even enjoy myself in the sun with my love or friends. Sadness ensued.
Two days before we left, however, O made an important call. He took me off the Revlimid, I (between NYC and PA) received two units of blood, and was put on a high dose of steroids. And just like that, something gave. The shift began.
The week in Florida between the steroids, sun, seafood, people who I love more than life itself, smell of the ocean, being on the harbor, snorkeling, eating, eating, and more eating. Was literally one of the best weeks of my life this year. In fact, when I sat down with my NP this week she asked how my trip was, and through telling her I literally couldn't stop crying of grateful tears. As both her and Rich looked at me probably thinking, 'what the heck is this woman crying about?" It was just such an amazing trip and even thinking about it overwhelms me with appreciation and gratitude.
It has been a long road since June, between the relapse last summer, getting on Revlimid, discontinuing Revlimid, and now facing this shift. I soaked up every meal, every moment, every piece of sunshine, conversation, sound of music, and smile I possibly could. And with that, I started to regain some strength. With the steroids I gained five pounds in seven days. I'm so grateful that my friends helped me continue to eat (even though they felt stuffed most meals!). Because with every pound, I felt stronger, refreshed, re-energized, renewed. And with every day that was spent with my love and friends from childhood, I began to feel like my old self again. I firmly believe that so much of my recovery is always due to people who continue to lift me higher throughout all of this adversity, and for that, I am so grateful.
 |
By the end of the week, I felt clarity and strength. Two visions I did not have in my mind before this trip. Which brings us to these next two weeks, and what is to come. Since returning from FL renewed, I met with O and the team on Wednesday for a bone marrow biopsy and blood tests. For this week, everything appears normal (this is wonderful); however, we know how easily things can change. We discussed next steps due to the fact that we both agree Revlimid just hasn't agreed with me and my quality of life, and we will have a PET/CT scan next week to see how large my tumor burden appears in my body. Currently (due to steroids for a week) my SED rate is 8, but most likely that will not hold for much longer.
Florida reminded me how to breathe again, how to take a step back when you are in the midst of hell and can not seem to figure a way to look elsewhere. Both my partner and I were beginning to dictate our lives only around doctors appointments, tests, meds, ect. We were losing sight of the mental piece, taking a breath, and stepping back to regain clarity over the situation. Luckily, I have wonderful family who encourages us to do just that.
Now I am five pounds heavier (117lbs!), filled with beautiful memories, energy, and the ability to make informed decisions over our next steps. We will PET/CT on Wednesday, and most likely begin a small-baby dose of Bendamustine to bridge to a CD30 Trial at Baylor College of Medicine, similar to the EBV+ Trial that I participated in over a year ago. I welcome these changes, am grateful to put Revlimid behind us, and look forward to deep breaths, more sunshine, and a calmness I haven't felt in quite a while.
 |
| I ate during 90 percent of this trip and it was amazing. |
 |
| Prepping for our snorkel day... |
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| Water-taxi to Peanut Island, obviously deep in thought :) |
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| Peanut Island |
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| A windy-St. Patty's Day... |
Sending Love,
B.
Thursday, February 28, 2013
Marrow is the word for the week.
A lot of people have been asking what has transpired in the last few weeks. Unfortunately I don't have too much motivation to write or too much good news, just because we are in such a limbo and I despise writing about 'in between' periods where we do not have any answers.
Once again this has been a rather rough month (an understatement). And although everything appears normal between my thyroid, IGG, and so many other outside tests; my blood counts are still not rebounding. In fact, my HGB (Hemoglobin) in the last two weeks has slowly decreased (8.5 to 8.3) almost in need of a blood transfusion.
Yesterday my partner and I ventured into the city so I could get a CBC (blood test). This was due to the fact that every single hospital in NJ will NOT access my port for a blood draw with an out of state physician's script. The only way around this would be to relinquish my care with Dr. O and his team and start with an oncologist who has never even seen a refractory HLer before. Lovely. So for now, Rich and I hop on a bus/train, and head into the city for a blood test. Luckily though, it has unfolded this way, especially this week. When I came and met with my NP, my heart rate was 130, and I did not even register on the blood pressure machine. Immediately we ordered two liters of fluids, and ran my blood tests that now cost $14 dollars a pop in travel. I love New Jersey ( sarcasm;) ).
Unfortunately the blood tests did not reveal what we hoped. Everything is slowly moving down that should be moving up, and vice versa. This also means, we're not quite sure what we are dealing with. Cancer is one thing, but I have never had difficulty with my blood counts over several months. From the hospitalization with tons of antibiotics, to a question of possible bone marrow failure (my greatest and darkest fear even above cancer), to hemolytic anemia (Dr. O's hunch). We don't really know what we're dealing with.
I've currently been off treatment for over a month now. And with an attempt at a getaway in Florida for my twenty-ninth birthday, we are expediting some things for next week. This includes a bone marrow biopsy on Monday to see what the heck is going on in my marrow to cause such sluggish blood counts, and a hopeful transfusion since I am running on fumes. If you believe in positive vibes of any kind I ask you (and I don't do this very often, but I do believe in positive energy), I ask you to send some my way that this has nothing to do with bone marrow failure. Anything else, I know it will be some form of treatment or care and it will be a somewhat easy fix; however, bone marrow failure is another level of illness that no one in this ball game is ready for. So, I would really appreciate your thoughts. Unfortunately this also means I need to put a hold on Physical Therapy, Yoga, and any intense activities just to be cautious.
In other news, I am trying to suck all the marrow out of life by spending my good moments with my favorite people and continue to be grateful for what I can do despite these small hiccups. Just a bit ironic since it's my bone marrow that are these hiccups, right? ;)
So despite all of this I've focused on the glimmers of light around me. This month I've had more time to spend with my grandmother who recently moved to Montclair, NJ. Was sent a beautiful and amazing package (with a frozen pizza and desert!) by one of my favorite caregivers and super-mom, Carrie. Who is now sick with the flu herself (so send some good energy her way too!). I was invited by my dear friend Manny to go see Cooper Anderson Live at the end of next week and am SO pumped for this.
Rich and I squeezed in two solid days in NYC and ate like queens and kings since we had the best restaurant recommendations in the city from RPS. We also were fortunate enough to see TWO musicals on broadway this week (I swear, broadway is one of the few places I just forget everything and it's such a breath of fresh air). During my doctor's visit yesterday I was able to meet, chat and laugh with Princeton's power-couple Alex and Brannan. And today, one of Rich's oldest friends came into Montclair to spend the afternoon with us so we could finally eat at one of our local restaurants. Just writing this warms my heart, knowing how full my life really is in so many ways...
Rich and I squeezed in two solid days in NYC and ate like queens and kings since we had the best restaurant recommendations in the city from RPS. We also were fortunate enough to see TWO musicals on broadway this week (I swear, broadway is one of the few places I just forget everything and it's such a breath of fresh air). During my doctor's visit yesterday I was able to meet, chat and laugh with Princeton's power-couple Alex and Brannan. And today, one of Rich's oldest friends came into Montclair to spend the afternoon with us so we could finally eat at one of our local restaurants. Just writing this warms my heart, knowing how full my life really is in so many ways...
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| Brilliant details at dinner... |
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| One curly-haired girl... |
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| Wicked's Stage (now one of my all time favorite musicals) |
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| Just us goofing around in NYC before Broadway... |
Even with the unknown, the fatigue, exhaustion, lightheadedness, weakness, and dropping counts. I have pushed my body a bit harder so I can hold on to these moments, because they breathe life back into me and nurture me, unlike any medication or treatment could. And I'm willing to push for that.
Bone marrow biopsy on Monday, hopeful results early next week.
Sending Love and Gentle Hugs,
B.
Tuesday, February 19, 2013
Caregiver Group
If you are a Caregiver of someone who has Hodgkin's Lymphoma (especially relapsed or refractory HL) I highly encourage you to join this new start up group. I, and the HL community found that there is a huge lack of caregiver support in the cancer world, and we want to make sure all of you have it!
Please come and join, ask questions, and know you're not alone.
Click here to join.
Sending Love,
B.
Please come and join, ask questions, and know you're not alone.
Click here to join.
Sending Love,
B.
Wednesday, February 6, 2013
A Plan in Place
Since the not so fun six day hospitalization at New York Presbyterian...
I just haven't felt that 'well.' I've been giving myself nueprogen shots every night for five nights to boost up my blood count since I was neutropenic when I left the hospital. And since leaving I've just felt incredibly worn down (says the woman who had three brutal infections and hardly any food at the hospital). I know my body should be feeling worn down, but it just didn't feel as if it was rebounding. So we made a plan to have a check-in with Dr. O this week.
I just haven't felt that 'well.' I've been giving myself nueprogen shots every night for five nights to boost up my blood count since I was neutropenic when I left the hospital. And since leaving I've just felt incredibly worn down (says the woman who had three brutal infections and hardly any food at the hospital). I know my body should be feeling worn down, but it just didn't feel as if it was rebounding. So we made a plan to have a check-in with Dr. O this week.
My lovely entourage (the moms and my other half)
ventured all together to visit with my amazing medical team to figure out
what our next set of steps were. I have been dropping weight, off the
Revlimid since the hospitalization, and we needed some direction.
I've unfortunately lost a total of 10 lbs since my
hospitalization. This is from the unfortunate and awful hospital food
that I honestly just did not eat, a combination of all the IV antibiotics making me
naseaus, and just focusing on the infections for so long. Due to this
major lack of muscle and body fat (I'm down to 115 lbs, normal weight is 125).
Dr. O has prescribed marisol and has ordered me to eat as much as my body
can. I need nutrients and a strong body to keep myself moving, and right
now we're in a holding pattern until I get this weight back on. Luckily
Rich has been making milkshakes for me non stop and cooking tons and tons of
food. I just wish my stomach would want some of it -- but we're doing the
best we can.
Dr. O also wanted to test a few other blood levels
between my thyroid, and immunoglobulins. Immunoglobulins (say
that ten times fast) measures known antibodies in your blood. Antibodies are substances made by the body's immune system in
response to bacteria, viruses, fungus, animal dander, or cancer cells. Antibodies attach to
the foreign substances so the immune system can destroy them. This will
help figure out some keys into why I might be having so many infections -- due
to my IGG count. If we can figure out a specific reason why my immune
system is floundering than we have the ability to correct it through
supplementational therapy. If not -- if it is a general immune issue, we
won't have the same luck and therefore might not be able to continue the drug.
Right now we are taking it a step at a time.
In the next two weeks, we will follow my blood counts, including my IGG,
may unfortunately have to have a bone marrow biopsy in there somewhere (ouch!),
and then we will meet again to pow wow and see our findings. Dr. O is
hopeful that after the weight is back on and these blood tests reveal some
answers that we should hopefully be able to begin the drug again and let it get
back killing this cancer.
For now though I have only been ordered to take my
antibiotics from all of my past three infections, eat like it's my job, rest,
and begin physical therapy again to gain back strength. A plan in finally back in place, which puts my mind and body at ease. So here's to getting back on track, slowly -- but surely.
Sending love,
B.
Wednesday, January 30, 2013
Hear me Roar.
Throughout this month I've been holding my breath thinking "This will pass... it will pass." From before the holidays with the shingles, to a recent boiley-chest rash with absolutely zero cause or reasoning to my most recent set-back at New York Presbyterian for six days. I'm still waiting for it to pass.
I also attempt to set small goals for myself every month: cooking a new meal, buying something new/decorating the apartment, applying for jobs, going to the gym 4-5 times a week, attempting to find anew yoga studio. It didn't feel like there was that much on my plate that month. But my body was telling me otherwise.
Revlimid has been a g-dsend with it's nightly dosing (i just pop one pill a night!), zero infusions, and hardly any side effects except my immune system going bizerk. Literally. It's turning things on that it never has had on before, and luckily turning off DNA switches (the cancer) as well. But in the interim, it's messing with me. Completely. And I am one frustrated pup.
Only two weeks ago I started having a head cold that somehow broke into a staff infection, bacteria infection, and another case of scalp shingles. Even I didn't want to be around myself. My counts aren't bad but they aren't normal. The only reasoning I am given when asking why I've had three separate skin-rash-breakouts within six weeks is, "The Revlimid is changing your immune system." Do I want this? Of course, but do I want to be isolated for weeks at a time - HELL NO. Cancer sucks, no matter what way you look at it. But I get really heated when I'm a)not allowed to venture outside my apartment b)not allowed to work out or go to yoga and C) not allowed to eat the things I crave.
For the third time in six weeks -- I'm back at this place. Being bedridden and isolated for six days is my worst nightmare, mostly because I become immobile, and I lose everything I work for everyday to keep my body healthy. My muscle mass, my balance, my eating habits. I lost five pounds in the hospital, and now am huffing and puffing just walking around the apartment. So, I am absolutely livid. The I am Bekah Hear ME ROAR... kind of livid.
Luckily, the infections are healing and the shingles have started going away -- but a part of me is waiting for the other shoe to drop. Because, it keeps on happening this month... We meet back with O and his team next week to discuss if and how we can prevent ANY of this from happening. The fact that I've never had shingles in my life, and now I've had it twice within a month is a big frightening. The fact that my face swelled up like a balloon and I was in so much pain, I literally thought the swelling was going to break my nose is even scarier.
I haven't truly been angry at this disease in a while, and sometimes its not worth the energy -- but in this instance its everything I need to start figuring out how to live with this drug, still get the things I need and use the anger as motivation to put the rest of this stuff in check. I'll take all of it, and once again for the 35285437954 time use it when I go into physical therapy to gain strength back in my legs and find balance in my ankles and hopefully return to the gym, and eventually go back to some of those monthly goals. Each set back is traumatic, especially this one. I've spent two days crying, now it's time to get back to work.
I hate being angry, but if it's there, I'll use it...
- b.
I also attempt to set small goals for myself every month: cooking a new meal, buying something new/decorating the apartment, applying for jobs, going to the gym 4-5 times a week, attempting to find anew yoga studio. It didn't feel like there was that much on my plate that month. But my body was telling me otherwise.
Revlimid has been a g-dsend with it's nightly dosing (i just pop one pill a night!), zero infusions, and hardly any side effects except my immune system going bizerk. Literally. It's turning things on that it never has had on before, and luckily turning off DNA switches (the cancer) as well. But in the interim, it's messing with me. Completely. And I am one frustrated pup.
Only two weeks ago I started having a head cold that somehow broke into a staff infection, bacteria infection, and another case of scalp shingles. Even I didn't want to be around myself. My counts aren't bad but they aren't normal. The only reasoning I am given when asking why I've had three separate skin-rash-breakouts within six weeks is, "The Revlimid is changing your immune system." Do I want this? Of course, but do I want to be isolated for weeks at a time - HELL NO. Cancer sucks, no matter what way you look at it. But I get really heated when I'm a)not allowed to venture outside my apartment b)not allowed to work out or go to yoga and C) not allowed to eat the things I crave.
For the third time in six weeks -- I'm back at this place. Being bedridden and isolated for six days is my worst nightmare, mostly because I become immobile, and I lose everything I work for everyday to keep my body healthy. My muscle mass, my balance, my eating habits. I lost five pounds in the hospital, and now am huffing and puffing just walking around the apartment. So, I am absolutely livid. The I am Bekah Hear ME ROAR... kind of livid.
Luckily, the infections are healing and the shingles have started going away -- but a part of me is waiting for the other shoe to drop. Because, it keeps on happening this month... We meet back with O and his team next week to discuss if and how we can prevent ANY of this from happening. The fact that I've never had shingles in my life, and now I've had it twice within a month is a big frightening. The fact that my face swelled up like a balloon and I was in so much pain, I literally thought the swelling was going to break my nose is even scarier.
I haven't truly been angry at this disease in a while, and sometimes its not worth the energy -- but in this instance its everything I need to start figuring out how to live with this drug, still get the things I need and use the anger as motivation to put the rest of this stuff in check. I'll take all of it, and once again for the 35285437954 time use it when I go into physical therapy to gain strength back in my legs and find balance in my ankles and hopefully return to the gym, and eventually go back to some of those monthly goals. Each set back is traumatic, especially this one. I've spent two days crying, now it's time to get back to work.
I hate being angry, but if it's there, I'll use it...
- b.
Wednesday, January 2, 2013
let's go, twenty thirteen.
Since November, I celebrated and survived packing, moving, unpacking, holidays in a new city, a case of face-shingles, a trip to New England, celebrating a good college friend's wedding, new years, and prepping for my first interview.
Here's to remembering and honoring those that we lost in twenty twelve,
and celebrating life to fullest in their memory, during twenty thirteen.
love,
b!
The year is starting off with a huge and exciting bang, and an ESR/SED rate of SIX. Normalcy is starting to set in again, and goodness it feels so good. Here's to lucky (twenty) thirteen with lots of health and happiness!
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The beginnings of our new home.. |
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My crazy shingles while packing up my old apartment.
It's NEVER dull being a cancer patient :)
For HLers: If you suspect any form of odd bumps/shingles, make sure to call your onc immediately.
Thankfully this cleared up within three weeks...
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Thankfully, I was able to put on a good face for the wedding
since it all cleared after some quick emergency doctor visits and meds!
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New Year's Wedding!
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| One giggly, amazing couple |
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| College loves.. |
Here's to remembering and honoring those that we lost in twenty twelve,
and celebrating life to fullest in their memory, during twenty thirteen.
love,
b!
Friday, November 30, 2012
Here's to December
Here's to:
- Still kickin' as I reach my sixth year living with Hodgkin's Lymphoma. This December marks six years since my diagnosis.
- Moving to a new city.
- Recently receiving excellent news that Revlimid is working, and tumors are drastically shrinking.
- Starting a new chapter with my partner.
- Having a zero-scan/check-up December.
- Living.
Sending love to each and everyone of you,
Here's to another December.
xoxo,
b!
Wednesday, November 14, 2012
For those who relapsed after an Auto-SCT or are Refractory Hodgkin's Lymphoma Patients:
This post is for any individual who has relapsed after an auto-stem cell transplant or has refractory Hodgkin's Lymphoma. I have also attached it to the top tool bar of the blog so you are able to access it at any given time. I hope this helps.
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I am Refractory (ABVD, BEACOPP and other first line treatments are not working)/I Relapsed after Transplant: What Next?
It has been an absolute honor and incredible struggle to be part of the Hodgkin's Refractory Community. The souls I have met and crossed paths with have changed my life dramatically; however, living with this disease on a daily basis is not the easiest of lifestyles.
Due to creating so many relationships with other Hodgkin's Lymphoma Patients, it has come to our (the HL commuinty) attention that there is not enough information or guidance when a Hodgkin's patient relapses after an auto-transplant. Since Hodgkin's disease is rare to begin with, and the cure rate is so high there are a small population of us who unfortunately do relapse. Therefore the next steps after an auto-transplant are crucial to your body, your survival rate, and your mental health.
Most general oncologists, although they are very well educated may not be well-versed in relapsed/refractory HL due to it's rarity. In turn, they may or may not be aware of various options for their patient. When you relapse and you are under a general oncologist, he or she can only provide you treatment that your specific hospital provides. Therefore, your next steps are critical to receive the best treatment for your specific disease.
I feel so fortunate that other Refractory HLers reached out to me during my time of relapse, and educated me on how to make the best choices despite my circumstances. I felt it was only necessary to do the same for others...
I feel so fortunate that other Refractory HLers reached out to me during my time of relapse, and educated me on how to make the best choices despite my circumstances. I felt it was only necessary to do the same for others...
Steps to take if you are refractory and or you have relapsed after Transplant:
Be aware that you have many options. And options give us hope for the future. These next steps are difficult, but trust me, they are doable. There are many of us out in the HL community who live long lives being treated with clinical trials or receive an allo-transplant and are alive today.
Review where you are located, who is treating you, and ask yourself these questions
- Am I being treated by a lymphoma specialist?
- Has my oncologist treated relapsed Hodgkin's Lymphoma before? Has he/she treated MORE than five patients?
- Am I being treated at a major cancer facility?
- Can my oncologist offer me other options besides an allo-transplant?
- Have you sent you files elsewhere and received a second opinion?
Go see the top specialists for Refractory HL in the country. This is in your best interest if you have relapsed after an auto-transplant to distinguish a short and long term plan. Call and consult with Dr. Anas Younes or Dr. Owen O'connor. They are both able to offer multiple options of clinical trials and discuss different transplant options, as well as their medical opinion of which track you should choose determined by your individuals disease. Be your own advocate, your cancer is serious but with tailored treatment you can be okay. This means, even if you can not manage a flight for a consult, email Dr. Younes or Dr. O'connor. When you email them include: Name, Location, Treatment History (hospital locations and oncologists you were treated by). Be short and to the point, but pack it with as much helpful information for these professionals to help you.
Memorial Sloan Kettering Cancer Center
New York, NY
New Patients Phone#: 646-497-9137
General Phone#: 212-639-7715
Be aware that the next FDA approved drug used for Refractory HL is SGN-35 also known as Adcetris. And there are other options... Most major cancer facilities and lymphoma specialists should have this form of treatment. There are many individuals who have reached remissions with this treatment, or utililized it to bridge them to an allo-transplant, or received this drug for managed treatment. Either way, it is a successful drug and it should be on your radar if you have relapsed or are refractory.
*Click Here to view a current list of open Refractory HL clinical trials. For you to do more searches, keep in mind what phase these treatments are on. Phase I, II, or III. (The higher the phase, provides a higher form of research).
- EBV+ Clinical Trial: Ask your oncologist to test your tumor block for EBV+ tumors/Epstein Barr Virus positive tumors (not your blood, your actual tumor block). You can do this by calling pathology yourself and requesting the test. If you have an EBV+ tumor, you might want to consider before all else a non-toxic clinical trial first. Read more on that trial here oh and here.
- Revlimid: Many Refractory HLers are seeing positive results from this drug, normally used for Myeloma patients
- SGN-35 + Bendamustine: Combination used in several clinical trials that are happening in the U.S. (Go to www.clinicaltrials.gov and use the search engine by putting in "Refractory Hodgkin's Lymphoma)
It is a very personal decision, and only you know what will be best for you. Please remember everyone's Refractory HL disease is different some of us have more aggressive HL, others are chemo-sensitive but very refractory (disease responds but continues to come back after treatment), and others disease never goes away but is not very aggressive. Due to YOUR individual disease, a lymphoma specialist, especially the two above will be the best doctors to determine what route: clinical trial vs allo-transplant you should be treated with.
- I encourage you to read some of the following on this topic.
- Written by Alison, mother of Adrienne: Cure vs. Management
- Research clinical trials around the country/world for Refractory HL at: clinical trials.
- Visit other educated Refractory Lymphoma patients on the Refractory Facebook Group and Hodgkin's Forum.
- If thinking about an allo-transplant research articles such as this one, oh and this one.
Ask Hard questions. This is your life. Ask those hard questions, even if it is difficult to hear. You are putting your life in your specialists hands. When you are faced with an allo-transplant or a clinical trial. Remember to ask your specialist the following:
- For those facing an allo:
- How many relapsed/refractory Hodkgin's Lymphoma patients have you treated?
- How many of those patients have achieved a remission? A five year remission?
- Discuss GvHD: How do you treat it? How many of your patients experienced Grade 3 or 4 GvHD?
- What is the percentage or mortality or survival rate of those treated with allo-transplant?
- How many patients have reached a remission and have low to little GvHD that you have treated?
- Discuss side effects, ALL of them. Even those that are 'rare.'
- Will this prevent/exclude me from receiving other treatments?
- When faced with a clinical trial:
- What phase trial is this? (one through four, four being the safest).
- How many relapsed refractory HLers have enrolled in this trial?
- How many of those HLers responded? Partial Remission? Complete Remission?
- What are the side effects? How will we manage these side effects?
- What is the mortality or survival rate?
- Will this prevent/exclude me from receiving other treatments?
- Visit Corporate Angels, they will fly you for free.
- Stay at Hope Lodge, a free facility for Cancer Patients in New York City.
- Reach out to your Leukemia and Lymphoma Chapter for financial support.
Above all, remember that with options there is hope, and there are many, many options for all of us.
Sending love and tons of light to you,
B.
Tuesday, November 13, 2012
Two thumbs up for Revlimid
Yesterday we received scan results after being treated with Revlimid for two months...
With two thumbs up from Dr. O'connor and my wonderful partner, we were all excited to hear that the Revlimid is not only working, but it is working quickly, and very well against my tumors. All of my nodes have decreased significant amounts. None of them are 'stable' or have 'mixed' results. For the first time in a while, everything is decreasing from starting with 3-4 cm nodes before treatment, to now only having nodes between .5 and 1.8 cms. And for those taking note, my SED rate is down to 15 (hot damn, it's in normal healthy range). We are absolutely thrilled. And although there has been a lot of loss lately in the HL community and on the east coast, we take this small kernel of good news and are running with it...
Revlimid is suppose to be a slow-acting drug on 20mgs. So all of us were a bit surprised that there was such a dramatic decrease since I was treated with 10mgs over a period of two months. Thankfully, almost all of my side effects have subsided and I am now tolerating the drug much better, except for some neuropathy and fatigue. Due to these factors, O'connor believes this will be a very positive drug for my future.
After the last six months, it finally feels like we are leaving behind the roller coaster of unknowns and are approaching stability and some form of normalcy again. It hasn't quite sunk in yet, but we will take it.
Here's to being on the other side of things!
Sending so much love to all of you,
B.
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