The Emotional Aspects of a Stem Cell Transplant
On October 7th, 2021, Louise Lavin joined our Stem Cell Transplant Chapter as a part of the Myeloma Crowd Community program to discuss the emotional aspects of a stem cell transplant.
Louise is an advanced practice psychiatric nurse and a licensed professional clinical counselor in Ohio. Passionate about serving the myeloma community, she is also a Myeloma Coach and utilizes her mental health background and her personal experiences as a patient to help fellow myeloma patients and their care partners cope more effectively with their illnesses. Noting that there were few resources offered to the myeloma community about emotional and mental health throughout the Stem Cell Transplant experience, Louise decided to create content to prepare the myeloma community and educate them regarding the emotional aspects of such a life-altering procedure.
You can watch the video below or read the summary in order to learn more about this fantastic event:
This video only includes the presentation and not the question and answer section in order to protect patient privacy.
The Emotional Aspects of a Stem Cell Transplant
The Stem Cell Transplant is a complex medical procedure that has very successful results against myeloma, a complicated blood cancer that tends to morph over time. While some myeloma specialists look at newly approved therapies and have begun to question the future of the stem cell transplant procedure in the future, as of today, it is still considered by many to be the gold standard of therapy. The decision to undergo an SCT is one of the most important decisions that you will make in your life. Due to its complicated nature, invasive side effects, and intense recovery, it requires significant preparation. Both the physical and emotional factors of such an intense, life-changing procedure are interrelated and cannot be ignored.
In this article, we focus on the emotional issues of the stem cell transplant, an area of preparation that is often looked over or not considered when patients are consulting with transplant centers or treating physicians before their procedure. The importance of preparing emotionally for a stem cell transplant cannot be ignored. Emotions play a major role in your overall health and wellbeing, and this is especially true when undergoing the Stem Cell Transplant.
One of the reasons it's so important to deal with your emotions in a positive way, according to psychological research, is that a Stem Cell Transplant is considered to be a "Significant Emotional Stressor". In normal life, if you're not thinking about myeloma, we have other stressors and some are more significant than others. In fact, there is a hierarchy of stressors that could be considered in our lives and that impact us emotionally. On the top of the list is the loss of a spouse and the loss of a loved one follows that. Other things that follow include being diagnosed with a serious medical illness such as myeloma. Getting divorced, married, losing a job that you really love, moving to a new city or state where you don't have any support group, or for some, retiring can be stressful events on the stress hierarchy list.
Louise believes that we also have a hierarchy of stresses within myeloma. A number of these significant stressors within the world of myeloma include:
- Finding a physician or specialist that you can trust to manage your treatment
- Relapsing after you have been doing well for a significant amount of time
- making the decision whether or not to undergo a stem cell transplant
As mentioned earlier, these stressors affect you physically and emotionally. Both the physical and emotional responses to stressors such as these are important. They are interrelated, intimately connected, and interdependent. You never respond physically and do not have an emotional response. You can never have an emotional response without a physical response. These responses cannot be ignored, especially in such a significant event as an SCT.
This phase is a hectic and stressful time. Even though you may have been planning for some time to have a transplant, the weeks leading up to the actual transplant itself includes a whirlwind of activities in preparation for the procedure. These include last-minute meetings with your myeloma specialist and transplant team, additional testing and procedures, and preparation at the house in order to reduce the risk of infection.
This is also a time for important decision making such as:
- Are you going to undergo an SCT?
- When will the procedure be? Where?
- Will it be an in-patient or out-patient?
- Who will your caregiver be? Are they willing to be a caregiver? Will they be a good caregiver for you? Will you have a backup caregiver?
- Have I made the proper arrangements for loved ones at home (including pets)?
- Am I aware and prepared for all insurance and employment implications that this procedure can and might bring?
These are a lot of stressful and hectic decisions to make in a short amount of time.
During this phase, you will experience a variety of emotions. There is no "one feeling" that you are supposed to or expected to have. It varies depending on you and your personality and can change from moment to moment and from day-to-day. These feelings might include:
- this is different than anxiety, it only involves your response to having myeloma
- myeloma patients seem to have much higher levels of distress than other cancer patients (due to no cure, intense and elongated treatment, and the high percentage of relapse)
- Hopelessness and Despair
- Sense of disequilibrium
- Feeling overwhelmed
Negative and Positive Coping Techniques
While negative coping techniques are more commonly used and "easier" reactions than positive techniques and reactions, these responses aren't healthy and we need to avoid them. Examples of these negative coping techniques could be: denying our feelings, putting our feelings on the back burner, ignoring our feelings, or keeping our feelings on the inside. These techniques become detrimental to our health and wellness when we notice negative emotions, as listed above, correlated with these actions. For example, there might be more introverted patients who tend to keep their feelings inside and not share them with big groups or other people, but rather only with trusted loved ones. There would only be a problem with that approach if the introverted patient becomes angry, depressed, or anxiety-ridden, due to the fact that they are not sharing their feelings. Again, these negative feelings will vary based on personal experience and personality.
On the other hand, positive coping techniques, though more difficult, are much more rewarding than the debilitating and isolating techniques mentioned above. These are challenging during the hectic pre-transplant phase.
Here are some tips to help you cope during this phase:
- Take a moment to relax and reflect
- What are you really feeling about undergoing this transplant? Find a special spot where you can really be in tune with what you are feeling
- Temporarily remove yourself from the chaos
- Recognize what you are feeling
- Share your emotions with someone that you trust
This is a time when you can expect to have ups and downs both emotionally and physically. Your emotional reaction and the way that you deal with the ups and down will depend on several factors, include your own mental health. If you are an emotionally stable person, you will be able to deal with the ups and downs better than someone that is more fragile in terms of mental health. You will need to depend on your inner strength during this time. It is also vitally important that you have a strong support system during all phases of this procedure. If you are doing this alone, please get as much help as you can from the medical and transplant team. Search for one person that can serve you in terms of emotional support.
Another factor in your emotional reactions during this time will be your medical response to the SCT. If you are doing well with your transplant, you will know it from the nonverbal communication from your transplant team. When they come into the room to talk to you, you will see if they are relaxed, smiling, and willing to talk. This news will help you have a positive emotional response.
However, you need to expect that the opposite can happen at times during a transplant. Your transplant team might not look relaxed or encouraging, and their tone will be more serious. They will tell you about what's going on medically and if you're having any complications. If you do receive this kind of news, it's very common to respond emotionally in one or more of the following ways:
- Helpless or hopeless
- Out of control
- Full of regret (you might regret that you decided to do this transplant in the first place)
- More emotionally fragile
- Lonely and isolated (even when surrounded by a care partner or medical team)
In this difficult situation, you need to pay attention to both the emotional and physical responses that you are having as they are extremely interrelated and cannot be ignored.
You have to do your very best during this difficult situation to use your inner strength. Remind yourself that you knew there would be ups and downs during such a serious procedure and this very well could be a temporary down phase within this stem cell transplant experience and that things will improve. You need to be honest with yourself about what you are feeling and share those with someone else, as you can't change your feelings.
Try to stay as positive and hopeful as possible, while admitting it's hard when things don't go well. Remind yourself of the reasons why you decided to have a stem cell transplant, the research that you did, and the reasons why the specialists recommended this treatment as part of your care.
If things are especially difficult, then express that distress (the cancer-related anxiety feeling) to your caregiver, loved ones, friends, myeloma coach, or support groups. By reaching out to others and getting support from them, it will help difficult times become a little easier.
If your feelings become overwhelming and are becoming a significant concern to you, that would be the appropriate time to reach out for professional help, even right there during your hospital stay or recovery process. Getting emotional help is very important and is nothing to be ashamed of or embarrassed about, in fact, it's a vital part of cancer care.
There are positive things that happen in the post-transplant phase, as well as things that are of concern.
All along you expect the post-transplant phase or discharge to be wonderful and with reason. It's a time of celebration, of relapse, and of a better-controlled or perhaps dormant myeloma in your future. There is a lot of excitement and joy.
However, there may be some underlying feelings that you need to come to terms with in order to avoid negative emotional reactions during the post-transplant phase. Up until now you have been monitored extremely carefully and been the center of medical attention. All of the sudden, you are going to be discharged and be on your own. You are going to have to transition back to being an independent, functional person with normal responsibilities eventually added back into your life. And although you want to gain your independence back, this doesn't mean that this transition will be an easy one.
You might be anxious as well as your post-transplant care. You might be confused or worried about the side effects and what you need to watch for, who you can call if problems arise day or night, and who can help you in terms of an emergency.
The greatest emotional factor in your post-transplant care will be uncertainty. You survived this procedure, but you don't know the results or the efficacy of the transplant, and waiting for the results can be an extremely difficult waiting period. If any of these post-transplant issues cause distress that is too much for you, please seek additional emotional support.
Appropriate Emotional Responses Following Transplant
During the post-transplant phase, it's normal to feel a variety of feelings. The following list includes some of the feelings that you might experience during this phase. Keep in mind that your feeling might be fluid at this time.
- Concern about results
- Worry and uneasiness
- Uncertainty about your future and your life with myeloma
- A deeper level of depression
- Grief and mourning the life that you had, even pre-myeloma life
- Acute sense of loss for the person that you used to be
- adjusting to your new identity might be difficult
- Hope and optimism for the future
- A determination to regain control of your life
- A feeling of gratitude
- A sense of resilience
There might be red-flag emotional responses post-transplant of which both patients and care partners need to be aware. The following list includes clues that a patient is severely struggling after their transplant. The ones listed in red are the biggest danger signs that someone is seriously struggling.
- Increased depression
- Sense of hopelessness
- Lack of motivation
- Inability to complete tasks of daily living
- such as eating, concentrating, personal hygiene, etc.
- Significant sleep difficulties
- Inability to control thoughts or emotions
- Noncompliance with care
- not wanting to take medications, get immunizations, no desire to follow rules or guidelines
- Withdrawing from others
- Overwhelming negative thoughts
- Thoughts of self-harm
Those experiencing any of the feelings above need immediate assistance from their mental health or medical professional.
The Importance of Your Mental Health During All Phases of an SCT (Summary)
- A Stem Cell Transplant is a significant emotional stressor that affects your mental health
- Your mental health has an impact on how you do physically during your SCT
- Both your physical condition and your emotional response play a role in the transplant process, they always go hand-in-hand, neither can be neglected
- Pay attention to your feelings before, during, and after your transplant
Value Your Uniqueness
The following is a closing quote from our expert, Louise Lavin.
Through the transplant process, I hope you value your uniqueness. You are unique as an individual, your myeloma is unique, and you will deal with your transplant in your own unique way. If it doesn't fit this scheme I have presented, it's ok. You are going to feel what you feel. What's important is that you recognize your feelings. And if you're struggling, advocate for yourself and share your need for additional support. Never be embarrased about needing extra help. It can be tremendously important and have a huge impact on how you do with the whole experience.
We are thankful to Louise for her shared expertise and hope that you share this with those that you think might benefit from it so that we can get more emotional resources out there for myeloma patients considering a stem cell transplant.
If you would like to join our Stem Cell Transplant Chapter, click the button below.
A special thanks to our sponsors without whom this would not be possible: