Once the decision to undergo a transplant has been made, there are several important steps that can be taken to prepare for the experience. On an emotional level, preparing for a transplant may entail spending time with friends and family or taking time out to be alone to experience one’s feelings regarding the transplant. On a physical level, this may include eating a healthful diet, getting good dental care and maintaining an exercise routine. On a practical level, it may mean choosing a transplant center, organizing caregiving arrangements and obtaining items for the hospital stay.

Facing the prospect of a transplant can be devastating, evoking feelings of dread, panic, and helplessness. Coming to grips with the idea that you may have a life-threatening disease while simultaneously dealing with a tremendous volume of information and new medical jargon can be mind-numbing. As you prepare for the transplant, it is common to feel overwhelmed by emotions. During this time, you are likely to experience feelings of anxiety, self pity and self blame. It is also normal to feel betrayed by your body and feel anger and jealousy towards others who do not have to face the same ordeals that you face. At times, you may find that your feelings undergo intense fluctuations, alternating between hope, anticipation and fear.

Another reaction you may have is that of denial. You may find yourself responding to the situation by becoming emotionally numb and very task oriented. As you go through various emotional responses, be understanding and gentle with yourself. After all, you are facing some of the most stressful situations you will ever face.

The transplant may also be seen as a new lease on life and, as such, a source of great solace and hope as well as a great challenge to overcome. Radical alterations in emotions and moods, as well as periods of relative calm, are all part of the common ways of coping to the idea of a transplant.

How you choose to cope with the prospective transplant depends on how you perceive it, your feelings, your personality and your own individual way of coping. You may wish to take a highly active stance in the process and research all medical and alternative options or to hand over control to others, or do some combination of the two. Do whatever works for you. In the following sections you will find suggestions and strategies that others have found useful.

Express Your Emotions
If you are experiencing great anxiety or fear, give yourself permission to express these emotions so that you can process them. Choose to express your emotions to people who are personally meaningful to you and who can be supportive. If certain people are not helpful, don’t feel guilty about avoiding them and focusing on your own needs. Seeing a professional therapist, particularly one who has had experience counseling people with life-threatening diseases, can be very helpful. One woman writes:

I saw a therapist to deal with all my feelings. I was honest about my fear of death and what it would do to others.

Another patient found it useful to face the issue alone before she included others:

I dealt with the news that I needed a transplant by giving myself license to take a break from everything and just cry and cry. I spent three days in my room just crying. Although I spoke to a few close friends and family members, more than anything I needed to be able to vent my feelings out alone. Only after processing it alone, was I able to really include others and get support from them.

A common theme that was reiterated by almost every survivor was the importance of honest open communication. In the words of one respondent:

It’s important to let your family and friends know what you are going through. Let your feelings be known and it will make things a whole lot better.

Contact a BMT Survivor or Join a Support Group
Contacting someone who has undergone a transplant can be very helpful and calming. Here are the experiences of two patients:

I was put in contact with someone who had a transplant at Hopkins about a year before I did. She was a wonderful emotional support. She answered all my questions, made herself available any time of day or night (by telephone as she lived in another state), and let me rant and cry as needed. I couldn’t have made it through the months leading up to my transplant without her. I tried to locate as many people as I could who had experienced a transplant and found out all the information I could about it. Talking to others who had been through it was really helpful.

Contacting a transplant survivor can be done through the National Bone Marrow Transplant Link (nbmtLink), where you can call or email requesting to speak to a transplant survivor who has been in a situation similar to your own. A peer volunteer who has undergone a transplant will usually contact you within a few days. Another possibility is to ask a member of your medical team or your social worker to put you in touch with someone who has undergone a transplant. If you have a computer and a modem, an effective way to get in touch with many transplant survivors is by signing on to a computer mailing list that specializes in bone marrow/stem cell transplants or certain kinds of cancer. Please check the Resource Listing to find out how to sign on and how to contact a survivor. Remember the information on these sites may not always be accurate or apply to you. Joining a support group where you can meet and openly share your hopes and fears with other individuals living with cancer can also be helpful. Sometimes, in the presence of others with cancer, it is easier to talk about issues that cancer brings up than with friends and family who may feel a need to protect you or who may feel uncomfortable or afraid of bringing up “negative” feelings. A group led by a skilled facilitator can provide a safe haven in which to explore feelings about cancer, life and death. Although talking about death can be scary, it can also provide relief to have a place to air one’s emotions about these difficult issues and hear others express theirs:

Getting cancer has made me realize that I am mortal and it has been really helpful to have a support group where I can discuss my fears about death and all the emotions surrounding my vulnerabilities.

Explore Books and Tapes
Books describing the experiences of others with cancer can be particularly helpful, as can many of the “self-help” books about coping and relaxation:

To handle the emotional side, I cried a lot at first, but then I got my hands on all the positive books I could find--Where the Buffaloes Roam, Bernie Siegel books, Norman Vincent Peale, Robert Schuller. I was going into this with a positive attitude--which is very important. Also I listened to a Health Journey tape “Guided Imagery and Affirmations” every day. It would help me relax and fall asleep.

Reading autobiographies of others with cancer made me feel less isolated, less sorry for myself. It was comforting to know that others had gone through similar experiences, sometimes more difficult than mine.

Some survivors found that certain self-help books made them feel responsible for causing their disease. In reading these books, remember that you are not in any way to blame for your condition. Cancer is caused by complex reasons having to do with the environment, genetic, social and individual factors. Cancer can strike anyone. If a book you are reading makes you feel upset, put it down. You are not obligated to read a book just because a well-meaning friend has recommended it.

Reduce Stress
During this time, it might be helpful to think of ways that you can reduce superfluous stress in your life. Although you may not be able to avoid some of the factors that are stress producing, such as your diagnosis of cancer, there may be ways to cope with your stress. Establishing a clear set of priorities and letting go of less important obligations can reduce the amount of pressure that you feel. Some people find it useful to make a list of the factors contributing to stress and examining ways to reduce the pressures. One suggestion is to allocate tasks to family and friends who want to help. Some friends may be willing, for example, to help you gather information about different transplant centers or to help you find books and tapes about visualization or some other topic of interest. Often people around you will not know how to help and will be grateful to you for providing them with concrete suggestions. Many of those who feel close to you are likely to feel helpless in the face of your diagnosis and impending transplant. Thus, by giving them concrete suggestions of things they can do, you may not only be helping yourself, but may be helping them as well. Here are the recommendations of two patients:

When people ask “What can I do” have a list of things you need help with at your fingertips and let them know specifically what they can do ... be direct about what you need.

When people asked me what they could do for me, I gave them tasks. For example, there were so many books I wanted to read so I asked people to read them for me then to give me a summary.

Going on a meditation retreat or cancer retreat can also reduce stress. One patient writes:

I went to a one day workshop with Bernie Siegel that was helpful and also attended a two day meditation retreat which did a lot to calm and relax me.

Another patient writes:

Before the transplant my husband and I participated in a holistic health program through the Cancer Support and Education Center in Menlo Park. The ten week course helped me to gain emotional strength and to better understand my immune system.

A different patient who was frustrated by the endless questions of her friends and family solved the problem by doing the following:

I made copies of some of the information [about my condition] and I gave this out to friends and family so they’d understand it better and quit bugging me with endless questions!

Sometimes continuing with your normal routine is the most effective way of reducing stress. One patient wrote that for her “just keeping our life pretty normal helped us cope.”

Practice Relaxation Techniques
Practicing stress reduction techniques that feel nurturing such as muscle relaxation, meditation, hypnosis or imagery may be helpful to you. Some people find that meditation reduces their level of anxiety and is helpful in combating depression as well as lowering their level of discomfort and pain. Those of you interested in finding out more about stress reduction techniques can find a list of recommended books in the Resource Listing.

Get in Touch with Your Spirituality
Spirituality can also be an important source of comfort during this period. Many patients report that prayer and/or meditation can be a source of support and psychological well-being:

Prayer, as mundane as it may sound, proved to be the most sacred form of emotional support for me. I suppose it was because many times it was difficult for me to articulate my most intense fears to others, but in my quiet meditations, when I sat with my most intense fears, I felt a higher power comfort me, and I don’t think one has to be religious to feel this presence. The best way to cope with all these afflictions, is to thank God and the doctors for another day of precious life, and to keep in mind that it will get better. Only my wife’s support and prayer to God really helped.

Participate in Activities You Enjoy
Reducing stress in your life can also be accomplished by incorporating activities that you find most relaxing, healing and fun. Here are the accounts of two transplant survivors:

To cope emotionally, I stopped working three months before the transplant thanks to the generosity of my co-workers who donated sick leave to me; spent a lot of time with my family; pampered myself and was pampered by my husband, parents, sister, and brother, who was my donor; went to Maui for ten days one month before the transplant.

My husband and I watched as many humorous shows as we could and kept a full social schedule so that our lives could remain as normal as possible.

Explore Creative Outlets
Finding creative outlets for one’s feelings or creative ways to feed feelings of hope can also be an effective way of coping with emotions and reducing stress:

I responded to the news that I needed a transplant by venting my emotions in poetry and art. I also had an “art party” in which I invited my close friends to draw positive posters about the transplant. Everyone made beautiful “Transplants Cure People” posters which I hung up in my room and later in the hospital.

I kept a journal beforehand ... expressing my feelings. I also wrote meaningful quotes for myself and wrote letters to loved ones.

In addition to writing a journal, you may wish to keep a notebook handy to record important information and phone numbers, particularly since during times of upheaval, it may be more difficult to keep everything in mind.

Put Your Legal and Financial Affairs in Order
Taking care of loose ends and putting one’s affairs in order does not necessarily signify an anticipated negative outcome. Sometimes, by dealing with difficult issues that may come up in the event of one’s death, it is possible to put these issues aside and focus on more positive things. One patient writes that to cope emotionally he did the following:

I made efforts to put my business affairs in order, made final arrangements with the Neptune Society in case I didn’t make it, notified my clients that I intended to resume my service to them when I recovered after being out of circulation for a while. All of this was necessary before I could fully concentrate on the ordeal and recovery.

Another woman expressed this as follows:

To cope emotionally, I put all my financial affairs in order with an Estate Organizer I bought. I also dealt with some issues between my children ... and myself about events that had occurred in their lives--divorce, etc.

Putting together a Living Will stating your desires in the event that your medical situation deteriorates is also important. Your social worker or physician may be a good resource to help you articulate your desires regarding critical care. Knowing that these issues are addressed beforehand can help you set your mind at ease and may also reduce pressure from family members who may feel uncomfortable about bringing these issues up for fear of distressing you or seeming to be overly negative.

You should also consider taking advantage of your benefits options such as Social Security Disability Benefits or the possibility of viatication—a process in which you can sell your life insurance as a way of helping you pay for medical and other expenses. Also be aware that as someone with a cancer diagnosis, you might be able to cancel student loans or get financial aid from certain organizations to reduce financial pressures post-transplant. Information about these and other resources can be found in the Resource Listing.

Don’t Take People’s Reactions Personally
People who are close to you may be undergoing a lot of emotional turmoil themselves as a result of your diagnosis. They may feel helpless and panicked and may not know how to reach out and communicate. You may feel abandoned at times or feel very angry with loved ones for not comprehending your needs. These emotions are understandable and normal. However, it may be useful to remember that everyone involved may need some extra understanding and compassion during this difficult period. In some cases, friends or family members may withdraw, not because they don’t care, but because they are too overwhelmed by their own feelings of fear, helplessness and uncertainty as to how to treat you. If you do get some unexpected reactions from loved ones, remember that their reactions probably have a lot to do with their own feelings. One patient advises:

Communicating with family members is very important, so keep the channels open. They need to know what you are doing and you need to know what they are doing. I guess that the art of compromise is heightened while everyone is getting used to having a person with a serious illness in their midst. We who are ill need to do some compromising too.

Seek Medical Information
Seeking medical information can sometimes reduce fear and help people regain a sense of control. This can be done through library and electronic research, by talking to doctors, former transplant patients, by visiting transplant centers, and by calling different cancer organizations that have knowledgeable people who can respond to your questions and concerns. For more information about such organizations, please consult the Resource Listing.

In seeking out information, remember that it is always appropriate to seek a second or even third opinion. Most doctors expect you to get a second opinion, and they will not feel hurt by your decision to do so. When, where and how you will be transplanted may prove to be the most important decision of your life, and you have every right to seek a number of medical opinions:

When I was diagnosed, my whole family and I went on an informationseeking mission. We called doctors all over the country, explored various medical options, and found out as much as we could about the different transplant centers.

When consulting a physician, don’t hesitate to ask for information a second or third time. Having a close friend or family member attend doctor’s meetings with you can be useful as it will allow you to review the information with someone else and to confirm that you understood the information correctly. Taping the medical sessions can also be helpful.

Take Time for Yourself
Often, in times of stress, people become forgetful or experience mood swings. In this difficult period, take time to extend understanding and compassion to yourself. Give yourself permission to change your mind, to take things one day at a time, to pamper yourself and to feel sad. By taking the time to re-evaluate and to make changes in your life, you may find that some of the best parts of your life may be expanding during the time when you are facing the worst trauma of your life. Allow yourself to think deeply about who you are and what matters to you so that you can prioritize your life and expand those areas that are most meaningful to you. Try as much as possible, not to give up hope. In the words of Michael Lerner, “Give yourself permission to hope, even in the face of all the statistics that physicians may present to you. Statistics are only statistics. They are not you. There is no such thing as false hope.”1 A wonderful essay by Stephen Jay Gould titled “The Median is Not the Message” speaks to the way in which statistics can falsely rob us of hope, while at the same time explaining the importance of correctly interpreting statistics.2 Keep in mind that being hopeful does not mean that you need to be positive all the time. You are still entitled to “bad” days.

Telling Your Children
Telling your children about the need for a transplant can be a difficult and delicate process. Depending on their age and temperament, children will react differently, responding with denial, fear, anger or acceptance. Generally it is not a good idea to keep the situation hidden from them as they will often be aware that something is wrong and may blame themselves. It is not uncommon, for example for young children to think that their actions somehow caused a parent or a sibling to get cancer. It is, therefore, very important to remove any blame. Assure them that nothing they or anyone else did caused the cancer. For a very young child saying something to the effect of “Dad is very sick and has to go to the hospital so that the doctors can help make him better” may be enough. For older children a more extensive explanation is better. One woman who had just been diagnosed with CML handled the situation as follows:

I discussed with my doctor ways in which I could tell my teenage daughters (12 and 16). She suggested while we were still in the initial stages of testing to say “there are a few things that this could be, an infection, a blood disorder and possibly leukemia.” This gave my daughters a few weeks to process this life changing information. It also provided an explanation for my anxious behavior.

When you explain the situation to them, try to the extent possible, to balance optimism and pessimism. Telling them that the person will be completely better after the treatment may make them confused and upset if that turns out not to be the case. However, it is important not to scare them with a lot of pessimistic information. Try to present the information realistically but in the most hopeful light that you can. Reassure them that the family member needing the transplant will be getting the best care possible at a transplant center with state-of-the art equipment and excellent physicians. Utilizing the help of professionals to answer their questions can also be helpful:

When the transplant was decided upon, we took our children to my doctor and she explained the process and answered all their questions. We also utilized a trusted family therapist to provide our children every outlet for their fears and concerns.

In your discussion, it is important not only to communicate information, but also to listen and acknowledge your children’s reactions and feelings. Let them know that their feelings--anger, sadness, fear and confusion--are normal, and that you also share some of these feelings.

You may also want to make sure that they know that cancer is not contagious. Some children may fear that someone else in the family will “catch” it, and so it is important that they understand that this is not the case.

Explaining the treatment is important since the greatest fears often spring from the unknown. Let children know about the transplant process and prepare them for some of the possible side effects such as the loss of hair or other physical changes. Let them know that once the family member is well again these changes will generally reverse themselves. You might also consider taking them to see the transplant facility if possible.

Finally, answer the questions as honestly as you can. If the child asks questions you don’t have answers for, do not be afraid to say “I don’t know.” Generally the amount of information you give is less important than the manner in which you convey the information. To the extent possible, try to provide an environment where it is okay to talk about and ask questions regarding cancer and the transplant process.

Making Your Hospital Stay Easier for Your Child
Before heading to the hospital, you can do a few simple things that might make your absence easier on your children. Some suggestions include reading a favorite story into a tape recorder so that your children can listen to the story and hear your voice anytime they want. Giving your children a piece of your clothing to sleep in such as a T-shirt, can also provide them with a sense of comfort. Preparing some pre-addressed envelopes to take with you to the hospital with note cards to send home on a daily or weekly basis can make it easy to communicate with your children and remind them of your love. On days when you are feeling too tired, you can simply draw a heart and drop it off in the envelope to send home.