Resources

Survivorship Guide for Bone Marrow/Stem Cell Transplant
Coping with Late Effects

Emotional Well-being

There is no magic pill to deal with the emotional effects of a transplant. However, there are things that we can do that can help make us more resilient to some of the challenges we face as long-term survivors. Here are some strategies that may be helpful in dealing with the long-term effects of transplant. Depending on your situation, you may choose to use multiple strategies together or focus on just one or two. Or, you may come up with your own particular strategy, suited to your personality and situation.

Feeling One’s Emotions

Our culture tends to emphasize feeling “happy” and having a “positive” attitude. Although there is value in taking a positive view of things, focusing only on the positive without allowing ourselves to feel the full range of emotions can be very constraining. Our emotions are an integral part of who we are. When we blunt our emotions and do not allow their full expression, we are cutting off important information about who we are and what we are experiencing. Sometimes we need to mourn our losses and express our grief in order to shift our expectations and make the necessary adjustments to our lives. In other cases, it is by mining the depth of our sorrow or grief that we can arrive at important insights. Expressing our “negative” emotions can be a way to clear them from our system and return to a balanced state where we can fully feel our joys.

I am sometimes inside for 3-5 days hiding from the world. I There is a myth that you need to put on a happy face. Emotions are there for a reason. They are useful and let us know what is happening.

I always try to feel my emotions, rather than to fear them and shut them out. My therapist told me something that has always stuck with me: change is inevitable. And, if you feel your emotions, they too will change, and you will move through them. If you fear your emotions, you are left with the constant emotion of fear.

Seeking Out Friends and Community

Just as it is nice to have friends to accompany you down a dark street, it is good to reach out to friends and community during difficult times. Our connection to friends provides a buffer against some of life’s stresses. Close friends provide comfort, distraction, and understanding during difficult times.

What has helped me most in dealing with the post-transplant experience is talking to friends about what I am going through. Not everyone can be there, but I have a special few whom I go to for feedback. They are really tuned into what is happening, and they give me perspective and support.

If you already have close friendships and bonds, foster those friendships and keep them alive. If you don’t have close friends or an intimate partner, consider expanding your social connections by joining a community with similar values and/or interests. Social networking on the Internet can be an effective way to find individuals with similar interests. You might also find good companionship by joining a religious organization, such as a church, mosque, or synagogue. Or you might discover kindred spirits in a meditation group, survivor support group, a book club, a hikers’ group, or another community organization.

Participating in Activities You Enjoy

Focus on what you can do rather than on what you can no longer do. Ask yourself what makes you feel alive, joyful, and fulfilled – and go do it. This may mean taking a walk in nature, painting, dancing, singing, or sitting on the couch and watching a good movie. Be attentive to what is rejuvenating and brings you comfort and joy – and act on it.

One of the things that has been helpful to me is to have a gratitude list. When I am down, I look at this list and realize that I have much to be grateful for.

Take time to consider how you can reduce the number of activities that you dislike doing in your life. Although you may always have to do things that you do not like, there may be ways to cut down on these activities by delegating them to someone else (maybe paying someone to clean the house) or finding ways to reduce the amount of time you spend doing them.

Charting Your Priorities

The following exercise may help you focus on certain priorities in your posttransplant life. Fold a piece of paper into four sections. On one side, list your favorite activities and think of ways to incorporate some of them into your life. On the other side, make a list of the things you dislike doing and consider ways to reduce the time you spend doing them, or ways to cut those activities out of your life. Your list may be comprised of small mundane things or can include a long-time dream. Carving out time for activities you enjoy may require you to change your priorities, or you might find that they can easily be accommodated in your daily routine. Below is an example:

Laughter and Humor

Find ways to laugh, particularly if you are dealing with an unpleasant or difficult situation. One woman who hated waiting in the exam room for her doctor changed the situation by putting on ugly plastic glasses with a big plastic nose and a black mustache whenever she wore the white hospital gown. When her doctor or nurse would walk into the room, everyone would burst out laughing. With a little dose of creativity, she was able to transform a stressful situation into one that had an element of fun.

When things are really tough, and life seems brutal, I try to bring to mind a funny joke or remember a funny situation, and, even though nothing has changed, it shifts my perspective just a little.

Bringing humor to a situation doesn’t negate the unpleasantness, but it can bring in a little light and make it more tolerable. Studies have found that viewing a funny movie of your choice can help reduce the need for pain medication.^[12] Finding the humor in things, taking yourself and life a little less seriously, and finding the ways to bring more laughter to your life will probably not change the circumstances of your life, but may change your mood and how you cope.

Befriending Uncertainty

Finding a way to make peace with the unknown is one of life’s biggest challenges. Although everyone faces the unknown and cannot know with certainty what tomorrow will bring, the transplant experience shines a light on these uncertainties and forces us to acknowledge, at some level, that the unexpected can happen anytime, and that some things are out of our control.

Years after the transplant, many of us still face uncertainty regarding how much of our stamina and health we will be able to regain. Many wonder about the risk of recurrence or a new malignancy. How we deal with uncertainty is different for each of us and may vary at different times in our lives. Sometimes, choosing distraction or denial to avoid thinking about uncertainty and the fears it brings is a very legitimate and appropriate way to cope.

At other times, it can be helpful to explore our fears with curiosity and to befriend the uncertainty. Sometimes it is by getting closer to that which we fear that we can lessen its power over us. One way to befriend our fears is to shed light on them. This can include talking about them in a supportive atmosphere with a good friend or a therapist, or exploring them through writing or other forms of expressive art.

Living life while recognizing its inherent uncertainty requires us to have not only courage but compassion – the compassion to be non-judgmental, to give ourselves the time and space to experience and examine our fears, and to realize that even in unknown waters there can be solace, hope, and joy.

Before the transplant, I would spend a great deal of effort trying to control the direction of my life. Now, I realize that many things are out of my control. So, I try to set my priorities and steer my life in a general direction. But if the river takes me in another direction, I don’t try to fight the current as I used to. I go with the flow, knowing that life will lead me down many unknown paths. My challenge is to find ways to enjoy the ride.

When I am fearful, I stop myself and take stock of the moment. The moment is usually just fine.

Finding Meaning

How we interpret our challenges has a lot to do with how we experience life’s obstacles. If we believe that our discomfort is for a good reason, our level of emotional suffering may be substantially less than if the reason for our suffering is not clear, or seems unfair or pointless. A marathon runner may experience a great deal of leg and foot pain in the last miles of a race but will push on through the pain with a feeling of accomplishment. However, if that same degree of leg pain were to be experienced without explanation, it would cause great suffering and distress. So, how we understand our physical experience affects our emotional response and also our level of suffering.

Knowing that I am a more compassionate and caring person than I would have been had I not gone through the transplant helps me deal with all that I have to go through.

I get tremendous benefit from talking with other survivors and hearing their stories. I also benefit from mentoring others who find themselves needing a BMT. Every story inspires me in some way. I believe in the power of connection with other people on an emotional level.

I had set several goals when I was told of my cancer. I was not going to die before I had accomplished these goals. I have two left to do.

Although we may not be able to change our medical conditions and general health, we can try to find meaning in the experience, reframe it, learn from it, or use it as an opportunity to do something that we wouldn’t have done otherwise. And if there is some purpose for what we are going through, it is easier to find the courage to walk the twists and turns of our path.

Many survivors find purpose and meaning through volunteering. Volunteering allows survivors to put their experience to good use by making a difference in the lives of others.

I have found that volunteering is the best way to deal with problems I have encountered. Finding ways to help other people always makes me feel more thankful for having been given a second chance at life.

Talking with other survivors, speaking at blood or platelet donor dinners, telling my story at schools, and participating in focus groups have been very helpful to me. If I can help one person, then I feel that the experience was worth it.

Adjusting Expectations

How much we suffer or enjoy a particular experience has a lot to do with our expectations. If it rains unexpectedly throughout a vacation, we may be very disappointed. If we go to a place like Scotland, however, where we expect a lot of rain, the same amount of rain will not detract from our sightseeing and enjoyment of the trip.

Similarly, if our expectation is that our health and strength will return to how it was pre-transplant, we may be more frustrated and disappointed than if we accept that our new normal may include discomfort associated with chronic health problems. Accepting that some health challenges may be part of life post transplant may allow us to cope with the setbacks with less frustration and fear. The key is to readjust plans to what is possible.

A few days ago, I suddenly came to a point of acceptance, acceptance of my new life, the new normal. I realized that this is how my life is going to be, and it is time to stop hoping/fighting for something different. I felt so peaceful. And then, just a few moments later, I realized that this feeling of peace and acceptance will also pass. There will be days when I will accept the new normal and days when I’ll rail against it.

It has been helpful for me to connect to others, keep low expectations, and find joy in the simpler, littler things in life.

The transplant killed my professional ambitions. The professional aspirations I had aren’t compatible with working part-time. Sometimes I dream of the life that could have been without the transplant, then I remind myself that I probably wouldn’t be alive. And, taking all into consideration, I feel fortunate to lead a pretty good life.

Seeking Professional Guidance

Many people find great comfort from seeing a therapist, counselor, or clergy person. Having a trusted person with whom you can share your experience, your feelings, and the changes you are going through can be very healing and helpful. Speaking to someone who can act as a sounding board and offer his or her own insights can help you make sense of your experience and find ways to deal more effectively with the challenges of life.

If the feeling of sadness or anxiety is overwhelming, it may be necessary to seek help from a psychiatrist who can prescribe medication to treat depression, anxiety, and post-traumatic stress disorder. Medications can be used short-term or long-term, along with counseling to help individuals deal with a specific problem or with ongoing depression and anxiety.

I found it helpful to see a therapist whose practice is limited to those who have had cancer. He taught me to meditate, focus on “the Now” and helped me to see the things that I have to be grateful for.

I had trouble seeing myself as a well person again. Seeing a therapist helped.

Some survivors prefer to seek help from a support group at a local organization or hospital. You may also find practical advice and resources from books or the Internet. Some are listed in the Resource Listing at the end of this guide.

The adjustments I needed to make after the transplant were nerve-racking. I found solace in support groups and close friends.

Religion and Spirituality

For some survivors, religious belief, ritual, and spiritual practice can be an important source of comfort and support post transplant. A belief in God, Jesus, Allah, Buddha, prophets, the wisdom of deeply rooted tradition, or a venerated teacher can support us and help us make sense of our experience, whatever it may be. Feeling that there is always someone to turn to can provide a great deal of security. Joining an established religious or spiritual community can provide opportunities to expand our network of friends, to feel part of a greater whole, and to get practical support when we need it. Many find that religion and daily prayer or spiritual practice is their most important source of sustenance.

Religion, therapist, prayer, music, food, talking with close friends and sister, and caring for my dogs sustain me.

I fully rely on God and Jesus Christ for my comfort and strength … and this faith is what keeps me constantly renewed each day.

During and after the second transplant and the CMV pneumonitis episode when I almost died, I became quite introspective and almost religious, but I “outgrew” that and am now back to my normal self.

The things that have helped me most are support groups, a healing group at my synagogue, and meditation.

Awareness of Mortality

Death is an intrinsic part of life. Everyone’s risk of death is 100%. Most people live the majority of their lives seemingly unaware of this fact. The experience of having a serious disease and a transplant often forces us to acknowledge our mortality. For many of us, this awareness is woven into the fabric of our lives post transplant, serving both as a source of inspiration and anxiety.

An awareness of our vulnerability can provide an added urgency and poignancy, serving as a well-spring for inspiration and an added appreciation of life. However, it can also be a source of great anxiety and fear that interferes with our quality of life, and in some cases, our ability to function. How we deal with mortality is cultural and personal. How we feel about death is a lens into our world view and personality. It has to do with our beliefs about life and the afterlife, and with how we deal with uncertainty and the unknown. Our ability to cope with mortality is also shaped by how we see our lives, whether we have achieved our goals, and what we believe is our legacy. Our views on mortality often change over time; what we feel about death today may be different a few years from now, and may change again decades later.

I worry that every ache is cancer coming back, and this heightens my anxiety. I am very afraid of death and dying.

My awareness of my mortality makes me more appreciative of life. I am less afraid to try new and more adventurous things. Heck, I survived a transplant, and that’s huge.

I don’t know what death brings. I just know that when my time comes, I want to die, embracing the dying life in me, celebrating all that was – warts and all. And I want, in my moment of passing, to step into the dark unknown, full of curiosity and wonder.

I try to do whatever I can to ensure my long-term health (get the follow-up treatment I need, eat healthy, exercise, etc.). And then, once I have done that, I don’t worry because I know that I have done all I can do, and the rest is not in my hands. I try to savor all that I have, knowing that I might not be here to enjoy it in the future.

OTHERWISE
I got out of bed
on two strong legs.
It might have been
otherwise. I ate
cereal, sweet
milk, ripe, flawless
peach. It might
have been otherwise.
I took the dog uphill
to the birch wood.
All morning I did
the work I love.

At noon I lay down
with my mate. It might
have been otherwise.
We ate dinner together
at a table with silver
candlesticks. It might
have been otherwise.
I slept in a bed
in a room with paintings
on the walls, and
planned another day
just like this day.
But one day, I know,
it will be otherwise.

Credit: Jane Kenyon, “Otherwise” from Collected Poems. Copyright © 2005 by the Estate of Jane Kenyon. Reprinted with the permission of Graywolf Press, Minneapolis, Minnesota, www.graywolfpress.org.

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