Facing Illness

                  Often, we become accustomed to our lives as they are and cannot imagine things being different. Even though I have battled depression for decades, I took my health for granted. I knew what it was like to battle mental illness and to feel like crap, but my physical health had generally been okay. I had a couple operations in my 40s, but within a few months of each, I recovered. It was not until a major illness struck me that I realized how fragile life is and how difficult it is to live with illness. For me that major illness was cancer. It changed my life and taught me how to fight and how to live.

                  Today as the new year starts, I would like to share what it is like to fight illness and how we can find our way through it. I am lucky that I had a healthcare team that included amazing doctors (an oncologist, a psychiatrist, and a psychologist), a physician’s assistant, nurse practitioners, nurses, and techs. I also had my aunt, a retired nurse, who stayed by my side throughout my battle and the support of my cousin. As you can see, I had a large team. We all do when we are open to help. In this post I will share my healing story. I do so with the intent of encouraging others who are struggling with illness and are discouraged by what their health is doing to them. I also want to remind people that even if you do not have a diagnosed mental health condition, your mental health will likely suffer when you are facing a physical illness. There is no weakness in admitting this. It is in acknowledging that we are struggling that we find help.

                  Stage 4 breast cancer struck me out of nowhere. Well, I guess it had been growing inside of me, but it surprised me. I had a mammogram that was normal just a couple months before being diagnosed. I clearly remember my primary care provider, Cristina, saying that word. Cancer. I still hear it echoing in my mind at times. From that moment Cristina and her nurse, Henri, encouraged me. They arranged for the care I would need. They were always positive with me. Their encouragement helped me battle cancer. This was especially important because my mental health was not in great place when I was first diagnosed. I needed their encouragement to help me know that I wanted to fight.

                  When we face illness, we face a lot of questions. Why me? Why is this happening? Will I get through this? How can I fight this illness? Am I strong enough? Will I make it back to the life I knew before illness? Will others understand what I am going through? How much help will I need? What if I cannot get through this on my own? All these questions and I have not even touched on the illness specific questions. If you are ill right now or ever have been, I bet you can relate to some, if not all these questions.

                  As I faced illness, I needed to make some changes. Outside of my mental health team, I really had not relied on anyone to help me. I was used to being on my own. I took care of myself. There was no one else. I had to learn to accept the help of others. I had to let family, friends, and colleagues into my life. I had to admit that I could not face this illness on my own. I had to accept their offers of help. If you are going through an illness right now, you might be able to relate to needing to accept help but being hesitant or even resistant to accepting that help. My advice to you is to accept those offers. It does not matter who that help is coming from. Know that you are not alone. If someone is reaching out to you, it is because they care about you and want to be there for you. They know that you would be there for them. 

                  I dealt with a lot of emotions as I battled cancer. Anyone who battles a serious illness is going to be faced with intense emotions. I went through it all. Anger, fear, grief, and hopelessness. These are real emotions. You will find yourself asking yourself, “Why me?” Then one day you will be struck by the realization that serious illness can strike any of us. 

I remember an old television show, “House”. One of the main characters is an oncologist. He saves the lives of his patients. Then one day he is struck with terminal cancer. Ironic? I do not think so. I think it is just life. We never know what life has in store for us. Now, this character made a choice I would not have made. He chose not to go through treatment. I think in most cases we owe it to ourselves to fight. Maybe I learned that from those who have been supporting me in my health battles. For years my mental health team has been supporting me in a fight against depression and anxiety. They then joined in with my physical health team to lead me in a fight against cancer. I learned that my life was worth fighting for from these amazing individuals. Even though the character on “House” rode off into the sunset on a motorcycle, I would like to think that he changed his mind after riding for a while and fought the cancer.

                  Illness is usually difficult. Just because you know what lies ahead is going to be tough, does not mean you stop fighting. Instead, you increase the fight. Back to the television show, “House”. There is something else I learned from the final scene. As that oncologist rides off, his friend, the rogue doctor who is the main character, joined him. The lesson there is that we do not need to go through illness alone. It may be difficult on many levels, but we can accept help and fight. So, whatever illness you are facing, whether it is mental or physical illness, or something else, do not try to go through it alone. There is always someone even when it does not seem like there is. I feel alone a lot. Sometimes I find myself believing that I need to go through everything alone. Cancer showed me that is not true. I have support. I just had to be open to allowing that support into my life.

                  I remember every bit of encouragement I have received in my battle. I would like to share that encouragement with you. However, there is too much to relate in this post. So, I will sum it up in five words, “Life is worth fighting for.” I learned this from nurses, nurse practitioners, my primary care provider, and my oncologist, from my psychologist and psychiatrist, and from my aunt and cousin. The battle may not be easy. That is okay. There is strength within each of us that we do not know we possess. Others see it, but often we need to be shown that we have that strength. As I said earlier, let others be there for you. They truly want to help you. If they did not, they would not offer. Reach out when you need support. I know it is hard. Allowing others to help was one of the hardest lessons I had to learn. So, I ask you to learn from my experience. We cannot fight illness alone. It takes a team. Healthcare providers, family, friends, and colleagues are all part of that team. No one should fight illness alone. I am grateful to everyone who helped me learn that lesson, to everyone who helped me fight and beat cancer. 

If you need help, reach out. Even if you do not think you need help, reach out. If you feel like you do not have anyone to reach out to, reach out to me. We are human. Humans are not solitary creatures. We need each other. 

                  

Family Caregivers Month

             November is National Family Caregiver’s Month. I probably should have written about this earlier in the month because family caregiving has been important in my life during the last two years. So, before the month ends, I want to recognize the amazing people who care for ill, aging, and otherwise struggling family members.

              National Caregivers Month was first proclaimed by the president in 1997. The idea for this month goes back to 1986 when the president declared, Family Caregivers Week. Recognition of family caregivers is something that I do not think gets enough attention. So many family members step forward to care for loved ones.

              As I discuss the importance of family caregivers, I would like to share a model of this type of caregiving. My Aunt Holly stepped forward when I was diagnosed with stage 4 metastatic breast cancer. Holly made sure I did not face my battle with cancer alone. She was at every appointment with me. She sat by my side during chemotherapy. She brought me into her home while I battled cancer. Holly sat by my side as I laid in bed sick from the chemo treatments. She supported me when my depression weighed heavy on me and made fighting cancer difficult. I could go on and on about all she did for me and continues to do. Aunt Holly is the epitome of a family caregiver. I would not have won my cancer battle without her.

              Family caregivers do so much. A basic definition of a family caregiver is someone who gives unpaid care and support for a family member who is aging, ill, or living with a disability or chronic illness. The caregiver takes on many areas of support including tending to the medical, emotional, and physical needs of their family member. This can include personal care assistance, such as bathing, toileting, eating, mobility, and medication. They provide and monitor medication and schedule medical appointments. The caregiver often takes their family member to appointments and coordinates medical care. They monitor symptoms and communicate with doctors and other medical personnel. A family caregiver provides emotional support to their loved one. Often, they help reduce aloneness and support mental and emotional health. The presence of a family member can provide conversation and a sense that the person is not alone in their health battle. The family caregiver also tends to household chores, such as preparing meals, doing laundry, shopping, and managing transportation. A family caregiver often provides financial and legal support. They may pay bills and/or handle legal documents. 

              The family caregiver often is an advocate for their family member. My Aunt Holly and my cousin, Sara, were involved in this way. Without them I would not have received the excellent medical care I received. They spoke for me when I couldn’t. They supported me when I had to speak up for myself. When a person is sick having a family member as an advocate is vital. I am grateful I had Holly and Sara. 

              A part of family caregiving that is particularly difficult involves end-of-life support and decisions. When I needed to create an advanced directive in case I could not make decisions for myself or my cancer battle was going to take my life, my cousin, Sara, held my hand through that process. She explained things and assisted me in creating the document. I now have an advanced directive in place. I am not sure I would have been able to do that on my own especially as the possibility of death loomed over me.

              Also, involved in end-of-life support is the coordination of palliative care and hospice. When these are necessary having family step in is important, but it can be very difficult on the family member. 

              Family caregivers have needs that are often overlooked because they are being selfless. Stress, burnout, and anxiety can arise, making it difficult for the family member to provide care. They may also experience guilt and think they are not doing enough. Another emotional issue for the family caregiver is grief. Often, they are watching their loved one struggle and face death. It is important that family caregivers receive mental and emotional health support. This can be found in conversations with other family members and friends, talking to a mental health provider, and/or participating in a caregiver’s support group. 

              Financial issues can arise. The family caregiver may need to take time off work and lose salary. The costs of caregiving are high. There are medical and practical expenses. Health insurance does not cover everything. 

              Family caregivers are vital when someone is ill. I have immense respect for family members who take on the challenge of caring for a loved one. My Aunt Holly took amazing care of me. I see her continue to care for others in need. She is currently assisting a friend who needs care. It amazes me how much my gives to others.  Another example of a caregiver I am grateful for is my brother, Tony. My mother can no longer care for herself. She has cancer and Alzheimer’s. Tony has stepped in to coordinate her care including all the medical and financial needs. I would not have known where to start, but Tony has taken on the challenge. I am grateful that he is doing all that he is doing. 

              So, as Family Caregivers Month comes to a close and Thanksgiving is in a few days, let’s take a moment to be grateful for all of the family members who care for a loved one. These family caregivers are indispensable. Without them so many people would suffer. I know I would not be here without the care Aunt Holly provided. I do want to acknowledge that my aunt and uncle, Chris and David, provided a break for Holly when it was needed. They stayed with me for a week during chemo and took me to appointments. Even my mom stepped in for a weekend. She also talked to me every day during my cancer battle. I try to be there for her now that she is battling debilitating illness. I take her to lunch every weekend and call her every day. 

              Family caregivers are amazing people and deserve more than just a month of recognition. If you know someone who is providing care for a family member, let them know they are doing a great job, provide them with a break, or just be a listening ear for them. Thank you to all the family caregivers who selflessly care for their loved ones. 

 

              

A Deeper Look at a Misconception

                  I want to spend a little more time on one of the misconceptions about mental illness that I addressed on Monday. It is often falsely believed that people with mental illness cannot live productive and fulfilling lives. Different mental illnesses impact individuals differently. People respond to treatment differently. As a result, there is no specific way of life for people with mental illness. Life might look very different for someone with major depression than it does for someone with obsessive-compulsive disorder. Depression might express itself very differently in people. 

                  I have been very open about my diagnosis, major depression and generalized anxiety disorder. These illnesses have been a part of my life since I was in my early teens. They have colored how I see the world and how I function in the world, but most of the time they have not stopped me from functioning. Have they caused difficulties for me? Yes, often, but I still function. When I am at my best, I can live with minimal disruption due to my illness. At my worst times I have had to take time off work for treatment. I worked for 26 years as a special education teacher. It wasn’t always easy. There were days when my depression clouded my abilities. There were times when I had to take a day off. Sadly, because of the misconceptions and stigma surrounding mental illness, I had to lie about why I was taking the day off work. I couldn’t say my depression was overwhelming me. Instead, I would have to feign a cold or flu symptoms. 

                  I remember having a conversation with an administrator who I had mistakenly trusted. I told her about my depression. Her response shocked me. She told me I had to turn off my depression when I was at work. What the heck does that mean? I had no response for her. Depression cannot be turned on and off at will. It is not a water faucet. I learned in that moment to not trust administrators with the truth about my mental illness. 

It is difficult for me to accept how mental illness and physical illness are viewed so differently in the workplace. When I was diagnosed with cancer no one told me to turn off my cancer. Why then is it seen as okay to expect me to just magically stop my depression? When I had to take time off because my depression had reached a point where I was not able to work, I couldn’t tell anyone the reason I was out of work. “I am sick” was my answer when asked why I was out. I learned it is better not to be open about my mental health in some situations.  This shouldn’t happen. We should be able to take time off for our mental health.

                  The misconception that mental illness is something we can just push into the background is hurtful and prevents people from seeking the treatment they need. While not all of us with mental illness are able to work, many of us are able to do so. We may require some accommodations, like the ability to take a couple hours off for a therapy or psychiatric appointment. People with mental illness are productive members of society.

                  Mental illness affects us, but it does not always incapacitate us. We need only look at some of the people who have spoken about mental health in recent years. Some are Olympic champions. Some are successful in business or health care. Others are authors or entertainers. They have a platform that they can use to garner positive attention for mental health. I am grateful for their openness. It helps all of us.

                  There is no one picture of life with mental illness. Some people may not be able to work or live independently. Others need time for treatments. Still, others can work and lead what might be called a “normal” life. Although, I don’t believe there is a normal life. I think the most important thing to remember is that we are all different. Mental illness affects each of us differently. In some moments we may need more help than in other moments. That is okay. What is important is to accept that we have an illness, but that illness does not define us. It is a misconception to believe that people with mental illness live a certain way. We are as unique as anyone else. Our lives are impacted in different ways at different times. Still, we have value. We are more than our mental illness. 

 

                  

Struggling with My Illnesses

                 I am having a rough time.  I don’t feel well.  In the past not feeling well physically would not be a problem.  I would have just taken an over-the-counter remedy and moved on with my day.  Now, I can no longer do that.  My head, or rather my anxiety, won’t allow me that luxury.  Cancer changed my world in so many ways.  It has required me to relearn how to live.  I have learned to fight a terrible illness.  Cancer has made me more vulnerable both physically and mentally.  As a result, I have learned to accept help.  I now understand that my life has worth.  Those are just a few of the lessons I have learned on this journey.

                  What hasn’t changed is the control anxiety has over me.  The anxiety has increased in some ways.  The last several days my stomach has been upset and I have been somewhat nauseous.  I also have pain in my abdomen near my liver.  This is the same way I felt right before I was diagnosed with cancer.  So, of course my anxiety has latched onto that fact.  I know Dr. St, my oncologist, who I really do trust, has said the liver pain is not likely to be more tumors.  She examined me just last week.  My bloodwork is good.  She has explained all of this to me.  On an intellectual level, I believe her.  I can understand that she is right.  I know I have a pet scan coming up that will likely confirm what she has already told me.  Still, with every twinge of pain and every second of an upset stomach, my anxiety screams in my head.  It tells me the cancer is spreading.  

                  I find myself trying to believe my doctor. I know she is right, but still, I am anxious. I can reach out to my mental health team, to my oncology team, to my primary care provider and her nurse, to Aunt Holly, and to other family and friends.  The problem is none of them have had cancer.  As well-meaning as they are, they have never experienced what I am going through.  Part of me says that shouldn’t matter, but on some level that I don’t understand, it does matter.  Not only do I have cancer, but I also have depression and anxiety disorders.  Each of these three illnesses is difficult enough on its own.  Combined they are hell.  

The anxiety triggers the depression and vice versa.  Worrying about the cancer triggers both the depression and the anxiety.  Not feeling well physically is picked up by my mind, which jumps in and makes me feel worse.  I hate this. 

                  The nurse practitioner in my oncologist’s office called me last week.  She told me how to handle my upset stomach.  I am trying to follow her directions, but my mind wants immediate results.  That is not going to happen.  As I write this, my mind is questioning why the antacids I took ten minutes ago aren’t working.  Of course, I need to give them time.  I know that, but the anxiety that fills my mind tells me it is not going to work.  

                  The worst part is that I have not yet gone to bed.  That is when my mind loves to attack me.  As I lie in bed, I feel the pain over my liver.  My mind shrieks, “More tumors!”  Even though, Dr. St has assured me that is not the case, my mind’s argument is compelling.  I try to replay Dr. St’s words over and over in mind.  I focus my thoughts on hearing her voice.  Despite my efforts, I struggle.  

                  This is the part of being sick that doesn’t get as much attention.  The mind games. I know it happens to some degree for everyone who has cancer.  My depression and anxiety intensify everything.  I need constant reassurance, which makes me feel guilty.  I feel like I am reaching out for help too often.  I don’t know what else to do.  That reassurance is necessary for me.  I need a lot of reassurance.  It is something I cannot control.  I try to talk myself into being calmer.  I tell myself to focus on what Dr. St said.  It is a battle in my head that I can’t seem to win.

                  I am doing what I need to do to improve my depression and anxiety.  Every day I receive TMS treatment.  I believe it will help, but again, I need to be patient.  Every week I talk to Dr. Klein.  I talk to Stephanie weekly.  I have regular appointment with Dr. S.  My mental health is being addressed.  Depression and anxiety are powerful.  They overtake my mind making it harder to fight the cancer.  

                  I wish I could sit down with someone who has experienced what I am going through and just talk.  I attend an online support group for patients with stage 4 cancer.  It helps, but it is not enough for me at this point in my journey.  I am left with the question, “What can I do?”  Right now, I am not sure I know the answer to that question.  I’ll keep searching for the answer. I’ll try to keep reaching out to my mental health and physical health teams.  I know they are willing to help and that it is okay for me to reach out.  I need to remind myself of that.

Cindi, Dr. St’s nurse navigator understands what I am going through.  I find myself reaching out to her more often.  However, I can’t do that in the middle of the night when my anxiety is at its worst.  I struggle more at night, but the days are not easy.  

                  As for the physical ailments I am experiencing, I will follow the advice I was given.  I will eat soft foods when I can actually eat and take antacids and nausea meds.  For my mental health, I’ll keep going to TMS and trust my team to guide me through all of this.  I know that overall, I am doing fairly well.  It is never going to be easy, but I need to believe it can improve.

 

Grateful Despite Cancer and Depression

           The past year has been very different for me.  It has been a difficult year to say the least.  Still, I have a lot to be grateful for this year.  As Thanksgiving is upon us, I would like to reflect on what I have to be grateful for.  Illness cannot prevent my gratitude.

            2023 started with me in a deep depression.  It was a battle that lasted months and impacted my ability to function.  It was one of the worst periods of depression that I have had in my lifetime.  That being said, I am grateful for my mental health team.  Dr. K, Dr. S, and Stephanie got me through a very difficult time.  My primary care, Cristina, also helped.  I am grateful to all four of them.  I know that not everyone has a mental health care team that they can rely on in difficult times.  In my darkest times they are there, supporting me, helping me through suicidal thoughts.  This past year I have really needed them.  They continue to be by my side as I battle cancer.  Having a mental illness and a physical illness is not easy.  I need their support and healing touch.  So, as I think about what I am grateful for this year, these four people are right there. 

            In addition, to my mental health difficulties, I am now facing cancer.  I am grateful that Cristina made sure I had the tests needed to diagnosis my cancer.  I am grateful that she made sure I am receiving the best care for my cancer.  That brings me to my oncology team.  Dr. St is amazing.  She gives me hope that I can beat stage 4 metastatic breast cancer. In addition to Dr. St., C has been inspiring.  She is the nurse navigator that encourages me with her dancing and words of encouragement.  Jackie, the nurse practitioner, helps by ensuring that I am prepared for chemo.  I also appreciate all the chemo nurses who provide such tremendous care.  They make sure I am taken care of and that everything goes smoothly during chemo.  I have hope that I can beat cancer because of this great team.

            As I reflect on what I am grateful for I must recognize my family and friends.  First, my Aunt Holly has been by my side through all my cancer journey.  She also understands the mental health side of what I am going through.  I am grateful for her care and encouragement.  My cousin, Sara, has helped me with so much.  I am grateful to have her by my side on this journey.  I remember us as kids, and I feel lucky that she is still in my life.  My mom and brother have been helping me.  They check on me and send supportive words.  I didn’t realize how much they understood about what I am going through until a recent conversation with my brother.  It has changed my perspective.  I feel grateful that they want to be an integral part of my healing journey.  My Aunt C and Uncle D check on me and encourage me.  They are coming to help me next week.  My Uncle A always texts to check on me and encourage me. 

            My friends have been great.  I want to mention them all here, but I am afraid I will leave someone out.  I’ll try.  Know that if I miss you, I still appreciate you.  Thank you, Pam, Shannon, Carol N, Sarah, Maria, Gus, Nancy, Jessica, Bernie, and Sharon.  I am grateful to the friends I went to school with over the years who have reached out.  It means a lot that even though we have been separated by time, you are still care.  Others have reached out including Sue, Robin, and Meg. Thank you to all of you.

            My colleagues have been wonderful.  I am touched by their generosity in helping me in my time of need.  I am grateful that so many of them reach out to me.  It means a lot. I appreciate my colleague, Robert, who sends me a gratitude list every morning.  It reminds me to be grateful.   Thank you to my former students who are wishing me well.  Your support means so much to me.  

            I know I have a battle with mental and physical illness.  It is not easy.  I have a lot of fighting left to do.  I am choosing to focus on the fact that I am lucky to have the ability and the opportunity to fight.  My battle is overwhelming, but my health care team, my family, my friends, my colleagues, and my former students give me the courage and strength to keep fighting.  I don’t know how my battle will end, but I am confident that I have wonderful people surrounding me in this battle.  For that I am grateful.  Cancer and depression chose me.  What they didn’t realize was they chose a fighter with a great support team.  I know it won’t be easy and some days are going to be hard.  At times I may want to give up.  That is okay.  It is part of the fight.  Good days and bad days will come together.  I will rely on my support team.  Each day I fight is another day to be grateful for.  So, thank you to everyone.  Please stay by my side and help me beat these illnesses.  

            I encourage everyone to reflect on what they are grateful for as Thanksgiving approaches.  It helps put life in perspective.  Even though I have to serious illnesses, I have a lot to be grateful for.  I have learned not to take life for granted.  Illness has given me that perspective. 

            I wish everyone a wonderful Thanksgiving.  I’ll be back next week.