Four Lessons from a Cancer Caregiver

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By Patrick Palmer

In June 2001, my wife, Angela Palmer, was diagnosed with stage 2 breast cancer while we were living in Tucson, Arizona. This was a huge shock. She had annual mammograms and never had any indications of disease.

Patrick and Angela Palmer

Angela and Patrick Palmer

She had a lumpectomy and completed about 50 percent of her chemotherapy protocol before we moved to the northeast where our family was located. We arrived in Boston in December 2001, bought a house and became engaged with a tremendous Dana-Farber team including Wendy Chen, MD, MPH, medical oncologist and Jennifer Bellon, MD, radiation oncologist. Angela immediately resumed her therapy and I became her caregiver.

During this period, I depended on a lot of different people for emotional and spiritual support. Meanwhile, I became the principal support mechanism for our four children. This emotional give and take could have taken a huge toll on me, but, with the assistance of Dana-Farber professionals and friends, we all made it through. Within 18 months, Angela had beaten breast cancer.

Then in September 2011, after experiencing various symptoms of nausea, rapid heart rate, and headaches, Angela was diagnosed with stage IV glioblastoma multi forme, an aggressive type of brain cancer. This was not a metastasized breast cancer but a brand new primary cancer. Angela underwent two surgeries, chemotherapy and radiation before starting on a therapy of Avastin. Over the next 15 months, she lived a fairly “normal” life. In fact, Patrick Wen, MD, director of the Center for Neuro-Oncology, and his associate and our primary oncologist Eudocia Lee, MD, recommended her to apply for her driver’s license and resume playing golf.

But after about 15 months on Avastin, Angela started showing signs of toxicity. She suffered three small strokes in June 2013 and returning to Avastin is no longer an option. Now, Angela has joined a revolutionary clinical trial that will target a genetic mutation and maybe, just maybe, she will be cured.

As the primary caregiver, I have been challenged to not only care for Angela, but also ride the emotional roller coaster once again. The roles and responsibilities of a caregiver depend on the type of cancer, but there are a few important things I’ve learned:

  • Don’t be afraid to ask for help – It’s not a sign of weakness. If you can, get a caregiver who can help you care for your loved one or assist with work around the house. Having an extra person on hand allows me to shop for groceries, do laundry and other tasks around the house. The social workers at Dana-Farber can recommend health care companies that can provide this service.
  • Make time for yourself – Sometimes you need to get away from the situation and take some time for yourself to relieve stress. Recently, my daughter came in to watch Angela while I took a day for myself in Maine. It was 24 hours where I could do a little fishing, some boating, and just be able to separate myself from the tension of the situation.
  • Don’t spread yourself thin – Something has to give eventually. Recently, I’ve had to take a leave of absence from my job, allowing me to give 100 percent of my time to Angela. It’s a hard decision to make, but you have to keep in mind the relationship you have with the person you’re caring for. Angela and I have been married 30 years, and you just don’t put that on a shelf.
  • Most of all, remember family is important  – Family and friends will help you get through something like this. Fortunately, many of the supporters who helped us through Angela’s breast cancer battle are back, offering their friendship and support.

For all those caregivers out there: don’t give up. Dana-Farber is moving mountains to find cures for all the cancers that have been identified. What is important is that you find outlets to relieve your stress, find ways to comfort your family, and ensure that you take care of your own health.

8 Comments:

  1. I would love to help you both/all if there is anything I can do – amazing, how helpless you feel when you can’t be there. I have taken courses in patient care and palliative care and would SO much like to help, if there is ANYTHING I can do. I know you have lots of family that are there, but I AM here and will/would do anything for any of you. God Bless you all and much peace and love.
    Jill.
    P.S. Hope you don’t mind, but you are on the prayer list at St. Jude’s without the last name –May I have permission to use the “palmer” name? Much love to you all.
    Jill XOXO

  2. Patrick,

    You and Angela clearly have a special relationship and many good friends and family. I’m sorry you have to go through this yet again.

    I took care of my husband during his 3 year battle with a rare form of lymphoma. We loved our DFCI doctors. Our oncologist, Eric Jacobsen, MD and our cardiac-oncologist, Dr. Anju Nohria gave us both amazing care. Your suggestions are good ones.

    I used a Lotsa Helping Hands website to help organize our helpers. I pray you, Angela, and your family have many more loving years together.

  3. I know this roller coaster ride that you are talking about. My husband of 27 years has glioblastoma and has been battling this terrible disease for 3 1/2 years. I have also had to stop working to take care of him. I have been out of work for 3 years. Thank you for some information on how to be a better caregiver. :)

  4. Pat and Angela,you are in our prayers daily and as you know we are here for you.
    Unfortunately due to our own personal issues at the moment,we probably will not be down in October.
    We do believe that Angela’s fortitude and determination and your love and support will see her through this trial.
    Love Tony and Lynn

  5. Margaret Cassidy

    Hello dears Angela and Pat,
    Thank you for the update about what you and Angela have experienced recently and your day to day challenges. I am so very sorry to learn about the complications Angela’s had with Avastin. Know of my ongoing prayers and love. I’ll call.
    Margaret

  6. You are in our thoughts daily and we love you both.We hope to come down in the spring to help,if we can.Love Tony and Lynn

  7. Thank you for writing this. My partner has Lymphoma and since this is the third occurrence we are trying to get her in remission for a donor stem cell transplant. What a roller coaster this has been. We met with the transplant team and even got the schedule for admission then we were told the cancer had returned and the transplant was off. Now we are in a new regimen of chemo…all the while I am trying to keep up my full time job and keep the driveway free of snow. It’s amazing the small chores somehow can seem now overwhelming. I want to start a non-profit organization when this is all over call snow angels for people in our situation so that the do not have to at least worry about snow removal. When we got home from the hospital last time our driveway had 10 inches of snow I had to deal with to get her in the house. How do people do this? I have never been a person to ask for help…it seems like such an imposition. Our families do not live nearby and most of our close friends are not local as well.

    • Hi Pam:
      A lot of people have difficulty asking for help. There are a couple of resources that might be helpful for you, including the National Family Caregivers Association and Lotsa Helping Hands. You can find links to those and other organizations on our site at http://www.dana-farber.org/Adult-Care/Treatment-and-Support/Patient-and-Family-Support/Patient-and-Family-Resource-Center/Resources-on-the-Web.aspx

      I don’t know that any of them have snow shovelers, but have you thought of calling a local church or house of worship to see if they have volunteers who might help? A local high school or even middle school might also have students who could help either individually or through a club. (I know personally, my son’s middle school has students who actively look for volunteer/community work.) Or perhaps a local civic organization (Rotary, Lions Club) might have members who could help.

      Wishing you and your partner the best. Hope the new chemo regimen is successful.
      Best,
      Michael

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