Last June 10th, the day before my son's second birthday, I learned the little frozen pea-like nodule in my collarbone was cancer (Hodgkins lymphoma specifically).
No one teaches you how to live after cancer, though. You think you'd celebrate after the news that your first post-treatment scan is clean, but you don't. All of a sudden, the proficient medical team that has been at your beckon call isn't as readily available. You don't see them every other week to assure you you're doing well. You feel alone and on your own.
Your husband thinks life will return to the pre-cancer normal, and you hope your memory returns to what it was.
The truth is none of those things happen anymore. I'm fortunate that my cancer has a very high cure rate. But, people do die of it and do have recurrences. I hope I am not one of those. Part of me is reserved in anticipation that the shoe could drop again any day.
Imerman's Angels (http://www.imermanangels.org/ and @imermanangels) was one of a few places I felt like I could let the few strands of hair I had left down. They don't judge, but they do try to make you feel like you are not alone.
I'd recommend them to anyone. I also know having cancer becomes a sisterhood - even if your cancers and treatments are not the same. You face the same fears and same realities about your life and possible death.
Cancer has changed me for the better in many ways - even with the anxiety that sometimes shackles my spirit. The best thing you can do for anyone going through cancer is to be there for them. Make their lives as normal as possible, and let them talk about it if they want to. So many people are afraid to talk about cancer, as the patient, you almost feel like you have to reassure them that everything is going to be OK.
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DDWeb,
Thank you for sharing your story, and I hope we hear more from you about how to live life after cancer. I never considered this aspect before, that life does not return to "normal pre-cancer life", but can return to a different type of "normal". I assume time makes this possible as well.
How long has your cancer been in remission? Can you tell us more about the Imerman's Angels and how they specifically helped you? Any other advice that you can offer women who are trying to regain a sense of normalcy throughout the stages of recovery (3 months, 12 months, 2 years, 5 years), and how time changes what is needed? What additional advice do you have for caregivers, as well as the health care community?
Hope to hear back from you soon!
December 17, 2009 - 3:35pmThis Comment
Alison-
Glad you reached out to me with your question. Are you personally going through something like this or have a friend who is?
My oncologist won't use the word remission for 5 years. Until then, we simply say that I've successfully completed treatment and have had clean scans. My first truly clean scan came in December of last year. I've had 4 or 5 clean scans since then, but the cloud of worry always follows you around.
Imerman's Angels - I learned of them through a chat room, of all things, when I reached out to a girl who'd commented on being a 3 year Hodgkins survivor following a stem cell transplant. She recommended Imerman's Angels. I originally called to offer myself as a resource for people who were going through treatment. Then, I realized I needed their services to help learn to live after treatment. I spoke directly with Jonny Imerman for about 45 minutes. He got me in touch with someone who's situation was similiar to mine (stage of cancer, type of cancer, treatment, age).
They provide a fabulous service to people who've had or have taken care of cancer patients.
Getting cancer is a strange thing. The minute you get the diagnosis, I think two things happen instinctually: 1. you have this overwhelming desire to beat it 2. fear, worry and anxiety take over and consume you.
People genuinely want to help. Most do, at least. You learn very quickly who your friends are and who they are not - you learn you had friends you never knew of.
We had no family close by and two very young children. People made us a lot of meals. It was appreciated but unnecessary. Our daughter was a newborn, she ate from a bottle. Our son was two and could eat off our plates if needed.
What I really needed was for people to want to be with me. I needed people to take me to a place of relative normalcy and either take me away from the world of wigs and side effects, or I needed to be able to talk about it. My husband carried the majority of the burden of being a parent and a caregiver to me, and most of the stress that accompanied both (with the possibility of losing his wife). He needed someone to offer to take the kids and to give him a few minutes of reprieve.
That was probably the biggest saving grace - we had several neighbors and friends who'd either come over and make us doing something together, or who'd take the kids to their house, so I could rest, and my husband could try to collect himself.
Normalcy: that's tough. Life takes on a new normal. Most of us lose our hair, so you have to deal with the time it takes for it to come back in and the possible differences from what your norm was. Mine came in the same. It's still short, a year later, but I've gotten accustomed to it. Your body is different from the chemo drugs or the radiation (I only received chemo). Most patients gain weight during chemo because of all the steroids they pump into you, so you're left with a healthy but fat body, and possibly the lack of energy to be able to address it.
The two biggest changes for me were my memory and my increased anxiety. Chemo brain is a real phenomenon and wreaks havoc on your short term memory. I honestly can't remember small tasks or conversations I had with my husband 5 minutes ago. People think life will be roses and sunshine when you've beaten cancer, and in many ways it is. But, everytime there's something wrong (headaches, gas, swollen knees), you panic and worry if it's back and has spread. You speak in terms like, "For now".
The biggest difference is that I put more of an emphasis on my family. They were my motivation for enduring chemo and beating this beast. Even when we're dealing with toddler tantrums (which happens often in my family), I always make sure my kids know how much I love them and squeeze them a little tighter when I hug them.
Life is, after all, ALL about the people you spend it with.
December 18, 2009 - 6:37amHi DDWeb - Thanks for sharing your story with us at such a deep level. As a two-time cancer survivor I've found one of the most difficult aspects is that friends often simply don't know what to do to help, and there aren't a lot of resources they can go to for that information. So they do things like cook for you, as you well know, because it helps them feel they've done something.
One of the things I've learned is that sometimes I have to take the lead when I sense people are uncomfortable and give them some guidance on how to talk with me about my life with cancer. That's kind of odd, just as you said - the patient helping the other person feel okay. You also said life is all about the people you spend it with, and helping put others at ease has led to deeper conversations and discussions that have been more focused on what I REALLY need.
A colleague from Chicago recently told me about Immerman's Angels, and I have just started researching them for a possible article for EmpowHER. I'm glad to know your experience with them has been so positive. One of the organizations that I've personally found very helpful is the Leukemia and Lymphoma Society.
http://www.leukemia-lymphoma.org/hm_lls
Also, The Wellness Community, a national non-profit with sites throughout the US, has a lot of services focused on living with cancer that I just haven't seen other organizations provide.
http://www.thewellnesscommunity.org/
It's good to have you in the EmpowHER community. You have a lot of insight that can help others, and I hope you'll stay in touch and continue to contribute.
Take good care,
December 18, 2009 - 6:54pmPat
Pat-
Thanks for sharing your information with me. I can't recall if I've been to thewellnesscommunity.org, but I personally didn't find LLS too helpful. In particular, I needed to connect with people who had been going through a smiliar situation. There were no support groups in my area, and I found that there wasn't a good database to put me in touch with the people I needed to speak with. Luckily, my sister and a former colleague put me in touch with 2 Hodgkins survivors who helped, and finding Imerman's Angels really made me feel personally better about things. Because they do their best to match staging, age, circumstances, location, it made me feel like I had a community available if I needed it.
What kind of cancer have you survived? Congratulations on beating it, doing well, and continuing to be a part of the community to do great things for other people. I personally feel this obligation to continue to do what I can to help people as we are now in a sisterhood.
Happy Holidays!
December 21, 2009 - 6:34amDana
Hi Dana - We are indeed in a sisterhood, and a very special one. I too feel a calling to share my knowledge and help support others. That's a key reason why I became the Cancer Guide for this site. You can read my profile here:
http://www.empowher.com/users/pat-elliott
While I've been a breast cancer survivor for more than 20 years, I've been living with chronic myelogenous leukemia (CML) for only a short time. There is no cure, and lifelong treatment is needed, just as it would be if I had another chronic illness such as diabetes. There are more people living with cancer today than dying from it, and the more we can support and help each other, the better.
Hope you and your family have a wonderful holiday, and I'm looking forward to hearing more from you in the days, weeks, months, and years ahead.
Take care, Pat
December 21, 2009 - 5:24pmPat-
Your profile is amazing, thanks for sharing yourself with all of us here. If you ever need someone to help spread the word and help people better understand what's going on, it appears our backgrounds are similar. I have a degree in Biology and have worked in the pharmaceutical industry for 10 years. I've spent my career taking complex medical information (my career has been primarily Diabetes) and turning it into a language people can and want to understand.
I wish you well as you manage your CML. I believe there was good data presented last week at the American Society of Hematology regarding some new treatments for CML.
So the question I need to know is if the fear of a recurrence, another cancer ever goes away. Or is there always a part of it there with you. Everything freaks me out right now, and my husband doesn't understand the sensitivity/paranoia.
I hope you have a wonderful Holiday Season and a Happy New Year!
December 22, 2009 - 6:50amDana
Hi Dana - Thanks for sharing your background with us. I've felt from your first post that you would have a lot of good information to share and I really liked the way you used words and language that any woman can relate to.
I can't predict exactly what you will go through, I can only speak from my experience with breast cancer. For me, the fear of recurrence has always been there, but the intensity of that fear has changed with time. I've stuck with the lifestyle changes I made immediately after diagnosis and they're no concern now. Five years into survival was a milestone for me, and when I started getting a lot more comfortable. Today I don't think about it much except when it comes time for my mammogram or there are reminders such as awareness weeks, runs, and so forth. If you're like me you will go through a balancing period over time. Right now there is a lot of information you HAVE to learn to manage your illness and navigate the medical bureaucracy. There's also the equivalent of a whole new language and even sub-languages to learn. This takes time and work, and the time you spend on it is a constant reminder of WHY you're spending time on it. Of course you're sensitive! If you weren't you wouldn't be human. The people who can best relate to what you're going through are other survivors and the caregivers who take on a lot of responsibilities that the patient usually takes on. It's very difficult, if not impossible for others to "get it" so it can help to stick with those who do.
Yes, there was a lot of good information on CML and all forms of blood cancers at the recent American Society of Hematology (ASH) meeting. Here's a link to some excellent video reports aimed at empowering patients:
http://www.patientpower.info/ash/
Take care, and we'll talk again in the New Year!
December 22, 2009 - 6:11pmPat
Christmas is a special time of year for me now - I received my first clean scan last December. A good friend of mine just sent an e-mail that her most recent PET scan (after relapsed Non-Hodgkins Lymphoma and a stem cell transplant) is clean. She's expecting her first grandchild in a few weeks. Christmas has a whole new meaning for her too.
Cancer has a way of awakening our eyes to what is really important in life. I'll look forward to seeing my kids faces when they open their presents tomorrow. But, the most important part of Christmas is that I get to be here to share it with them. That is the gift that Christmas offers, and a gift for which I am very grateful.
Happy Holidays to all!
December 24, 2009 - 10:12am