Can a positive attitude alone cure cancer? No. I called this website chemotherapy cheerleader, because in the vast majority when metastatic cancer is cured, it is because of chemotherapy. But does attitude influence outcomes? Yes and below I will discuss biological and medical reasons why being “positive” can help. Let me be clear, having or dying of cancer is not the fault of an individual, nor reflective of attitude and all cancer patients have ebbs and flows in emotional state. But our mental state can ease coping and can impact our physical well-being in an impactful way to cancer treatment. I chose a career in cancer medicine partly because I am in awe of the human body ability to prevent so many cancers. Our cells replenish regularly, copying long strands of genetic material and not surprisingly mistakes occur; but there are multiple check points to prevent these changes and therefore prevent cancers. Furthermore, our immune cells can often identify subtle changes of pre-cancer cells and kill those cells before cancer is ever established in our body. Therefore, cancer is part of our biology and something that happens. Death from cancer occurs because these cells develop sneaky ways to cheat our body at its natural check points and even can orchestrate a defense against treatment. Often what makes a cancer more difficult to treat is just the biology of that individual cancer and this is not in our control. We are learning more and more about the important genes involved how to target these genes and what each gene means to different cancers, but much is still not completely understood. Our attitudes are not going to miraculously cure us of the genetics of our individual cancer.
Having partial genetic information on a cancer may help us choose more effective therapies, but we still rely on monitoring a cancer’s response to treatment as the best indicator of our cancer’s response to treatment. Therefore, cancer treatment comes with constant uncertainty and this is extremely difficult. How can anyone cope? It is too much for an individual to handle and our caregivers are very important warriors in this fight. Our ability to live and thrive with diagnosis, treatment and survivorship is often to credit of them. Timing of treatment is just as critical as writing the dose and we depend on our caregivers to mentally motivate us as well as physically get us to medical appointments multiple days a week. I was lucky, being well versed in cancer medicine; I could do a lot of self-advocating. But despite my knowledge and having a great primary oncologist, getting the care I needed was a constant exhausting and challenging battle with someone in the medical community. Critical to my treatment was my optimizing my treatment with my medical team and not allowing hospice to be the only option. This role of learning about your type of cancer, advocating and often fighting for your needs is a role many caregivers play. Our caregiver partner(s) help us focus on our treatment by not allowing us to self-wallow, get stuck in mourning our previous healthy identity, and prevent us from feeling “down” about the impact of medications and surgery on our body and mind. We reach out to this group to ease the stress of new financial burdens. The treatment can interfere with the ability to care for ourselves, to work, and other routine life skills, so our caregivers relieve us of life duties because we need our entire focus on treatment and living.
Not only do we ask of our caregivers to take over control of our life, because we are often incapacitated, but to do it with a smile, keeping us feeling secure, not allowing us to feel too guilty, and reminding us to laugh and to stay joyful and positive. I needed the deep belly laugh that I got from a friend regularly buying me lottery ticket since my cancer was one in million and when friends would swipe my “fall risk” bracelets before a night out on the town. I needed the involvement in their lives and they benefited since obviously I was much more qualified to give life advice when I was bald (kidding here). This support, infusion of joy, and connection with the world outside of cancer, made it possible for me to comply with the arduous treatment schedule. My caregivers enabled positivity that fueled me to eat when nauseated, if vomited to just eat again, and to keep a routine exercise schedule even in the hospital. Nutrition and exercise is critical to remaining healthy during chemotherapy. They help prevent infection especially of the lung and skin. Walking promotes lungs expansion; exercise can release into the blood natural chemicals to boost our immune system, make pain more tolerable, and promote healing. Prevention of infection, allows chemotherapy treatments to occur on time. The balance of natural substances to lessen pain may theoretically lessen generalized inflammation that may interact within the tumor to incite cancer cells, change the density of the tumor, so that exercise may actually alter tumor biology (cancerous and non-cancer cells make up tumors and both are involved in the biology) and/or improve chemotherapy delivery. During treatment I would often fall into a semi-dream state visualizing my caregivers and friends destroying my tumor with their given superpower and indeed they are a therapeutic piece of this complex treatment. Our caregivers allow for us to hope, dream, and help give us the will to live through treatment. Unfortunately, with advanced cancer, without this we can die of disease, since it takes so little. As a doctor, I often prescribe anti-depressants and take controlling a patient’s pain seriously because anything to help us cope has an actual impact on overall care. Having experienced isolation in my survivorship course, I discovered I couldn’t cope with much less. I can say with some certainty that I would not have survived my cancer if I experienced that during treatment, despite the fact that I have now proven the biology of my cancer was responsive to treatment, but it took a lot of treatment. I wouldn’t have been able to comply with my part if I did not have a positive attitude and the support of my caregivers.
I was very lucky that I had a large group of friends and some family to help with my care. So that they could share tasks and I could draw on their different strengths. But often it depends on a smaller group. Typically it is the spouse, and it is extremely touching to witness the spouse that embraces this difficult task. I have shed many a tear bearing witness to such love. Equally it can be heartbreaking for those that depend on a spouse for whom find caregiving too difficult and give up. So I have started to think about if steps exist where we can make it easier to give care for those whom it does not come naturally and eventually becomes too much.
This is not an easy problem. In my own relationship, I felt powerless, vulnerable, in a poor position to communicate effectively having just started my recovery with still physical and mental effects from stage 4 treatment. For me I also had the issues of moving overseas, being isolated from my social circle, temporally sacrificing my career, my self-identity and any financial safety net of my own. But it enables me to easily imagine how the difficulty would have intensified had I been newly diagnosed. Maybe as spouses we need to prepare mentality for such type of scenarios? In most cases lesson learned from easier obstacles can help some with preparation. But if this is an area of weakness in your partnership, it is likely that it is identifiable much earlier, which gives me hope that it is skills that can be worked on. I may have underestimated what I needed from a partner during early survivorship and being a trailing spouse, but our mutual strengths and weaknesses were clear much earlier. Humans are compassionate in nature, and most can rise to challenge of this role. But there are still too many divorces during cancer treatment and this in both heart-breaking and detrimental to their partner’s therapy. I also believe that this kind of family abandonment during times of crises negatively affects our larger community.
Abandonment of caregivers is extremely rare in my field, pediatric oncology, and the unconditional love parents have for their child is palpable. But since in these cases caregiving is often shared and requires the parents to be a team, I still get some exposure to some of the conflicts that arise. These parents cope with tremendous stress and trauma together, but because there is not the added layer of them being medicated or physically incapacitated, there is more opportunity to work through it in real time. Unfortunately, it is not atypical in pediatric oncology for parents to divorce during or soon after their child’s treatment. As a physician, I often chose to talk to parents openly about these issues early on in their child’s treatment; in hopes that maybe I can prevent one divorce. I advise parents to try to identify an additional caregiver if possible. They need breaks to spend together, alone, and as a family with their other children. I encourage them to find time to connect whether a date or long walk. I ask them to discuss how they see their roles as a caregiver of an ill child. My observation is partners who are disappointed in each other lack understanding of the other. One partner may define being a loving caregiver by reading medical literature and questioning their child’s doctor decisions. The other parent may define being a caregiver as following each of the doctor directions without exception. Yet another may focus on their child’s “normal” activities like homework and playing. Understandably, this can lead to conflict and viewing their partner as inadequate. Counseling is an option I often discuss, because communication increases connection and compassion for one another. Finally I suggest that they take little time to stay connected to themselves with the things that gave them a sense of wholeness pre-trauma, to discuss those needs with their partner. It is helpful to set their priorities as a team to support one another and to maintain some self-identity despite the many barriers. As physicians we should remember that caring for a whole family is part of caring for a patient, and we can use our knowledge of what treatment entails to guide family expectations.
I think it must be harder when it is a spouse going through treatment. There is a sudden shift in responsibilities that they may not be prepared for and there is a loss of mutual support. Communication in this situation is hard. The patient is already so vulnerable because there a tremendous sense of loss of control from the cancer and treatment. How in this situation can one initiate a conversation about their changing needs? There are so many fears that develop, related to cancer, but also of their partner’s reaction, they may feel that it is unfair of them to “ask” so much, even though such obstacles are part of commitment. I felt vulnerable enough not bringing in an income (due to move) or savings (due to the cancer) and being dependent on my spouse’s income and more important on his health insurance because my remission was so new and I was still requiring medical interventions. So many barriers to communication arise; the normal give and take becomes unbalanced for a very long time. Medications and illness affect the patient’s spouse physical state, mental clarity, sex, body image and emotional capacity. The caregiver may not understand how medication and illness effect emotions and the mind and it can be scary to watch their partners change. Spouse caregivers can be more successful when they identify friends and/or family who can support them and others who can help share those caregiving responsibilities. I assume this is why I observe that families that come from cultures with large extended families, have better coping than the small isolated nuclear family. Even 5 years later I feel the physical effects of illness and medications which do not allow me to be the “super women” I tried to play in an earlier version of myself. Sometimes you will be so out of it that your spouse will hear and watch you act in ways that you never have before. I remember trying to help prepare a friend’s husband for these changes, asking him to understand that it is the medications and not her, and advising him to build a thick skin and allow things just to be said and forgotten and to try his best to not take such things too seriously. This situation is exacerbated by the speed that these changes may occur in. I guided him that he would need to step away at times and do things for him, and not to feel guilty and to allow others to share in the caregiving. Furthermore, caregiving is a marathon to be sustained during long treatment plans. As difficult as it is for the patient to relinquish all of this control it is equally difficult to learn to be in control again, so caregiving often does not stop at the end of therapy, there is no clear end date.
Ultimately, although it may not be “fair” it the responsibility lies with the caregiver spouse to find the resources to increase understanding and empathy for your partner and to transform yourself into a caregiver. Try to be easy on yourself and your spouse, because it is going to be hard enough. My hope is that you benefit from the self-growth, the rewards intrinsic to selfless giving. I believe that it is the action of giving that truly makes you fall in love and hopefully this time strengthens your relationship as you meet this challenge. I certainly got a closer, deeper relationship with my friends at the time. Early in my marriage I actually felt guilty for having shared such a powerful experience that connected me to others that I did not share with him and that I had no words to adequately explain. It is also difficult for the patient not being able to give. I mourned parts of me that were able to give more before my illness. I felt self-disappointment when I fell short of self-expectations. Giving and compassion is such an intrinsic part of our humanity. Recently, I was thinking of last Thanksgiving with my nieces. It is my favorite holiday, but was a less of important traditions for their family. Our nieces who adore my ex-husband were excited that I cooked a big spread for them in their home and to have us all together. More importantly they were inspired them to plan a meal (make fruit platter smiley faces) for us the following night. It brought them more happiness to be giving to people that they love, and there was lots of squealing to be heard!
Although I was transparent regarding my struggles as a new survivor entering a marriage, I do regret that I was not more able to effectively communicate and the fog of illness and medications made it difficult to even to clarify my own needs to myself. So please do not be frustrated with your partner, if you find that is the case. I understand the struggle on both sides. For me, I was so exhausted being in fight mode. Above all else, I wanted in my partner during early survivorship was to acknowledge the fight that had been through, to hug and reassure me that I was safe. To reassure me I could breathe and in due time that I would figure out why my life was spared and reset my goals of my new reality. And even though our partners cannot protect us from the cancer coming back they can help us create a safe place. So communicate with your ill partner, take the responsibility. I hope that you will be both be rewarded greatly by such brave action.
Tips for Spouse Caregivers
Take on the responsibility. There will be a lot. Your spouse must focus on treatment. Life as you previously knew it will be “on-hold” for a while.
Remember when we find ourselves being judgmental; it’s our mind telling us we need more information to increase understanding. Communicate with your spouse, their doctor, and friends to seek understanding and not judgment. Ask questions!
Remember this is hard. Reach out to friends who can share caregiving responsibility. If they are with your spouse in the hospital use that time to care and do things for yourself.
Although this is an extremely difficult task, remember there are rewards of giving unconditional selfless love.
Be forgiving to you and your spouse. When you spouse is on a lot of medications, expect at times they will not act like themselves, maybe angry, let it go and forget.
Although your spouse’s entire focus will be on treatment and living. Remember to discuss things with them that having nothing to do with them being sick. Infusion of joy and making them feel connected to the world outside of the hospital is an important part of your role.
Remember you our part of the therapeutic plan.
Take steps to prepare your relationship for such obstacles.
Next posts will move back to cancer biology and treatment issues.
Sending love and strength,