I recently wrote this on a Hodgkin's Support Board/Forum. The message is more or less for Hodgkin's warriors or any other cancer survivor battling their way through first or second-line treatment, with a hope of a cure.However, I do believe if you've experienced any traumatic event you will be able to relate to this post as well.
Also let it be known that without the knowledge of Sarah and Adrienne and Alison. I doubt I would be able to write the following...
(Refractory disease: those who are resistant to treatment or respond to treatment but the cancer continues to return, this is my type of disease.)
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Just as I was beginning to finish my six months of ABVD chemotherapy, Sarah Hawthorne (now a precious angel), posted a thread about relapse. In her own words, she said that if we were not facing relapse, we shouldn't think about it. That, it is a very small category of individuals, and that we should just live, LIVE, LIVE. After we completed treatment.
I took those words to heart, and at twenty two, only a month after my six months of chemo, moved back to my undergrad stomping grounds in Boston. Bald, scared, nervous, but ready to take on the world, a second grade teaching job, and master level classes. I was going to live. That's what Sarah said to do, so that is what I was going to do.
A lot of people struggle once completing their first line treatment. We worry, we have anxiety, the fears, the nightmares, and it's all understandable. I hear all of you when you say you're concerned, 'well what if it comes back?' I was completely guilty of those fears as well; however, something in Sarah's post motivated me to not let this disease entirely consume me. I had a choice. I could either, stay in my hometown with my family. And slowly, decide when to start my life again. Or, take life by the horns, and start now. I didn't focus on, if it would back. I did not question my doctors every visit. I made my choice. I was done, I moved, I left, and I began life.
I moved back to Boston in August of '07. I went out with friends, I started a job, I took four grad courses, I embraced Boston with everything I could, I tasted every day as if it was my last. And, I even had an incredible whirlwind romance that ended in the best friendship I could've dreamed of. All within a six month period. Did I think of cancer? Of course. Did i worry about it every day? No. Sarah told me not to. So, I pushed on. Looking back, without any hesitation, those five/six months were the best months of my entire life.
Six months after my last chemotherapy is January of '08 I relapsed. And within a quick, eight month period, I quit my job (for the second time), left school, my friends, the romance, my city, and fought for my life after undergoing a stem cell transplant. When August of '08 arrived, only sixty five days after transplant. I thought of Sarah. And , once again. I made a choice. I could either sit in my small home town and wonder.. what if I relapse again? What will I do if it comes back? How will I go on? Or, decide to not feel my neck every night, not focus on my scars, not question every bump or bruise on my body. And move back, to Boston.
Which is where I am typing these thoughts right now. There are a lot of new individuals who are going through first and second line-treatment on this board, and you will find this foruma wealth of information, the support is incredibly loving and kind hearted, and the friends you connect with, I guaratee will be some you will hold on to the rest of your lives. However, consequently, it is also a place, that introduces individuals who relapse, and relapse again, and that can cause some, concern. And the ability to form these anxious fears...
It turns out, at my hundred day scan. I did, in fact, relapse again. But my thoughts aren't here for you to read about being refractory. They are here for you, to carry with you, as I've carried Sarah's.
In life, we have many choices. Where we live. Our professions. Our partners. Friends. Where we decide to educate ourselves. But, there are some things we do not have any control over. Our disease, our staging, specific treatments. The point being. I hear a lot of ou... when you say, 'I can't stop worrying, it's just not that easy.' Trust me, I've been there. And, I recognize that none of this is easy. None of it.
I know, how hard this is. I know what it is like after six months of chemotherapy, feeling defeated, worn down, broken hearted, lost, scared, and questioning yourself, your beliefs, and possibly your faith. I have felt and experienced all of it. I know what it is like to scramble for finances, to lose sleep over health insurance, to wonder - truthfully and honestly how much time do I have left? I have been there, good g-d, I have been there.
However because of other refractory warriors. I have learned from the beginning - at the young, immature, age of twenty two. That, we all have choices. Remember: We do not have any control of our disease, but we DO have control over how we react to it. In my eyes, it is your choice what to do with your thoughts, and actions after you have completed treatment. Think, worry, overanalyze? Or focus on what can be done, what you can acheive, where you can go, and what you do now...
Sarah was right. We are a small group. The relapse and refractory. And I truly wish none of you take this path. But, these are lessons I learned two years ago. In my own head, if I allowed the fears of cancer to rule my life - it won. The disease itself might not have won physically, but emotionally, if I let it control a majority of my thoughts. It won. And, I don't like to lose.
This note is not meant to hurt, or offend anyone. More or less it is meant to open up your eyes. I know, I am only twenty four. There are things I have yet to experience, and I know for some of you.. you're thinking in your head. Well, she doesn't have a family or kids.
And you are right. I do not have a partner. I do not have children, that might be left behind. But, I am a young adult, with incredibly close family, friends that would take a bullet for me, health insurance to constantly worry about, and bills to be met. I have responsibilities, I live on my own, and I have made these choices, more or less with my family's blessings opposed to their own feelings. I understand the feeling of wanting to ask everyone... 'Well what if it comes back? What will we do? How will we cope? How am I going to financially, medically, physically, and emotionally survive?'
Cancer is frightening. It's scary. Relapse, is no one's cup of tea. And refractory...is absolutely bone-chilling. But, if you take anything from this, or me, or Sarah. Know that if you are not living it NOW. Do not let it consume you NOW. Those questions, 'What if it comes back?' Well it hasn't. And most likely. It won't. And that's where you get to make your choice. If a stubborn, twenty two year old... can put these thoughts aside. You can too. If a twenty three year old can battle through transplant, and then move six hours away from home... You can too. If a twenty four year old can live with cancer inside of them, and continue on with school, life and not have cancer be every single thought of their day.
You can too.
You have a choice. And yes, I realize it takes time. And yes, I believe everyone has to process this disease in their own way. But, at some point when you have completed your first or second line treatment, you will be faced with a fork in the road: to worry or not. To let it consume you, or not. To let these anxieties eat you alive, or get therapy. To lay awake at night wondering 'what if?' or to live now.
So, my message, I guess is this: Our hope is that your anxieties and worrying minds, lessen over time. And when you are faced with the decision to stay in your home-town, and dwell on cancer, or take life by the horns and move to Boston.
I hope you join me in Boston.
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Sending you love, love love...
B
9 comments:
I truly doubt that there has ever been an 'immature' bone in your body..........I hear everything you say and the passion behind your words........you are a shining light, little lady, and for that reason, among many, I love you to the core.....<3.....Vx
Please pardon. This comment raises an issue. It's something I feel strongly about.
I want to comment on your statement a couple of days ago, quote: "I live, with a cancer, that most likely will never be cured."
I can't agree with that, at least not the way you state it. Medical science is moving fast. Treatments undreamed of are being imagined right now. The longer that any cancer patient can control their disease, the greater the chance that a treatment can be developed which improves their chances. First, improvements in treatment which can control a disease are developed. You are already benefiting from them. Next, treatments which can lead to a complete remission are in store for many. Then, ultimately, a treatment which will allow a patient to say, with increasing confidence, that they consider themselves cured. I envision all this as a rising curve of benefit, and the longer the patient can stay stable, the longer they can ride that curve upwards. Targeted therapies are in the future - therapies in which the patient's own cancer cells are manipulated to create a killer cell or killer antibody or killer nano-particle of some kind. Anyway, my feeling is that refractory patients should concentrate on surviving today, one day at a time, and staying abreast of every new technology which does not close doors on future treatments. I would amend your statement to "There is no doubt I will be cured, if I live long enough for the right treatment to become available. My disease is stable, but I don't know how long I will have to wait for a cure."
I think there is NO doubt that eventually virtually all HD patients will have a new treatment which will make chemo itself, the frontline treatment, a second line treatment. Or obsolete entirely. 20 years ago such a statement would have been a dream. 10 years ago it would have been called very optimistic. Now, it is just a matter of time.
It is still difficult, I know. But I am suggesting that saying "I cannot be cured." be replaced with the slightly different saying "I don't know how long I must live with this disease." In both cases, living each day is a victory, but in the latter case, it is both a tangible and an intangible victory.
You have a strong concept of yourself and your relationship to your treatment, and that concept is working for you already, but please do consider whether a slight amendment to that concept might be ok for you.
Skymist,
I respect your opinion; however, I believe by stating that 'I live with a cancer, that most likely will never be cured,' leaves room for a possible remission, or possible cure.
When you experience the rollercoaster of acheiving remission, relapse, remission, relapse, reduction, growth, ect. You have to learn coping skills.
Do I hope that I will be cured? Of course. Do I think it's possible the longer I hold on? Yes. Is this something that will happen for me today? Most likely not.
I can understands your words, and wanting to voice your concerns. However, for me, to put one foot in front of the other, I live by the motto of:
Prepare for the worst, and hope for the best.
Mentally, I would not be able to function if I continued to believe that every treatment, scan, ect. Will bring a cure. My reality? I live with chronic cancer.
When a PET scan tells me otherwise, I will welcome that opportunity for a remission or a cure. But, mentally, when people ask me how I keep going?
I have to tell them, I prepare for the worst. And, deep in my heart, I truly hope for the best. Although that hope might be locked up, very tight. And not shine through in my posts, I believe that, close friends and family know it is still in my heart.
So, although, I recognize and respect your thoughts. I continue to stand by my words, as well.
I live, with a cancer, that most likely will never be cured. My disease. My cancer. Might, never be cured. In my life time, and that is something that keeps me grounded, balanced,and stable, and able to continue on with my life.
My hope, of course, is that someday -- I will be proven wrong. But for today, this is what I live with.
Again, I welcome your thoughts, and appreciate you expressing them.
Sending Love,
B
Thank you Bekah for writing some of the most beautiful words I have ever read. I am Chris alt-delete's Mom, Cindy, and, I am ashamed to say, have been an "occasional" reader. It's not that I don't want to read what you say, it's just that it hits home with such a punch that it's hard to take sometimes. Cancer is certainly no stranger to our family as I'm sure you know about my daughter, Nicole, Chris's sister and her brain cancer. Chris has always been the strong one who gives me advice and his opinions on how to handle her and her problems, and he still does despite his burdens now. When I read your blogs, I get a sense of what he's going thru because I've heard him repeat certain phrases that you have written and he's shared thoughts and philosophies that are so like your own. He's not a complainer so it helps me so much to read what you write so I can get a semblance of what he's going thru at a certain moment. Bekah, you seem to find joy and goodness in all things we take for granted and I thank you for sharing your wisdom and for giving me such a greater understanding of what my beloved son is going thru. Please know that you are in my prayers daily. I have nothing but the highest respect and admiration for you, a wonderful woman who is helping more people than you will ever know. Thank you for sharing your most private thoughts. God bless you thru your continuing battle, I know you will never give up, a true warrior never does.
Bekah,
You are absolutely amazing. I haven't checked in with you for awhile because I thought you were going to stop the blog. I am glad you didn't. You have such a wonderful perspective and it helps me see things more clearly in my own life. Thank you for that.
I am glad you are taking Boston by storm....again! You deserve the happiness and success you will achieve.
Peace
I totally understand Bekah. I really do. I have been stable for sometime but that's as good as it will get.
My oncologist did me a favor and I truly believe this by saying that my from of lymphoma was a chronic disease. He told me it would come back and it did three times. I also believe that we accept that or we don't.
I agree with your motto. Prepare for the worst and hope for the best.
I think its a positive thing to be prepared and understand the worst and the best.
You are a blessing young lady. To many who may not write or post. But ready always gives me food for thought.
K
Dear Bekah,
Thank you so much writing. Your strength in light of the challenges you have faced/are facing is so encouraging to me as I go through this Hodgkin's journey. Being in the "Now" is all that anyone really has. Being in the "Now" can be difficult as it is; during trying times like cancer it is certainly no easy feat. (In fact, "the mind" is probably one of the hardest things about this whole experience!) I respect and admire your strength of will. I don't know what lies ahead of me. I am planning on making the most of each day, though. I am twenty-four as well, and in that stage of life that is usually thought of as the "venturing out" stage. I can identify with a lot that you wrote. I just want to say "thank you" and "Bless You" from the bottom of my heart! You have immense courage, girlfriend! P.S. Who knows what we are doing on other planes right at this very moment? There is more happening than these human eyes can see! We are just seeing one layer of it. Much Love.
hi! I am a new reader and a fairly new HL patient (diagnosed in Nov. 2008).
I just wanted to say thank you for your words...I am there now trying to deal with all these emotions and scary frightning thooughts! I am also about your age (I'm 25) and had to put my life on hold now to move home and get treatment (I am a 3rd year medical student), I felt like I was reading about myself when I read your post (my positive self that is on days when I can find it)...so thank you again for not only being so strong and continuing to fight this but for sharing your encouragement with others!
Dear Bek-
Thank you for the great reflection on Sarah. She was just finishing SCT when I relapsed and found her and the board. My outlook on having cancer again would have a much different one...a darker one...without her.
I think that hope does ring through in your post. There is a hope that is definence- in standing tall with the weigh of realities firmly on your shoulder- there is a hope in acknowledging the possible outcomes but still finding purpose and meaning in them. You have this kind of hope and it shines like a blinding white-light.
There is space in your statement..."I live, with a cancer, that most likely will never be cured"... and all though is is subtle it is there nonetheless. In that space is your hope and life itself.
I leave you with two phrases that I got from Sarah.
"the only way out is through"
and
"Tomorrow never knows"
-D
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