I truly believe that there is nothing worse than hearing someone you love has cancer, except perhaps hearing that you yourself have cancer. Who knows which is worse unless you are unfortunate to have both things occur.
I do know that hearing my mom had cancer hurt me more than learning that my father was dying. And it’s not simply because my relationship with my father was complicated. I’ve dealt with death and dying before. Besides, he had dementia and anyone who has had a family member with dementia knows that they come and go like ebbs and tides until they finally go and never come back.
I was prepared for my father’s death, well as prepared for death as you can be.
I don’t care what some people say, death is not a natural thing. If it were, we as the human race would have found some way to make it easy so that we could be as indifferent to it as we are a cloudy day. Besides Jesus wept when he heard that his friend Lazarus had died, so if there is any proof that death was not part of the original plan for us, then there it is. Jesus wept knowing he could Lazarus back. I’m sure all sorts of religious scholars have all sorts of reasoning about why this occurred, but to me it signifies that there is no easy way to let someone go, even if you had all the power in the universe, letting go hurts.
Hearing that my mom had cancer suddenly propelled me to my Lazarus moment, except that I am powerless. I cannot make cancer vanish with a word or a sweep of my hand. I can only wait, watch and hope that the doctors are right and the treatments are effective.
I am not alone in this of course. Every time I take my mom to an oncology appointment, I see the faces of my comrades in arms. Some are too weak or depressed to respond or smile back at me, but we are comrades nonetheless. We can recognize that in ourselves, even as we sit silently in the waiting room. Others are more jovial and welcoming. I don’t see how they stay that up-and-positive, even as I fight to be just like them.
There is the one o’clock man we see every day in the radiation waiting room. Mom has the 1:30 appointment. He just seems like the happiest guy. I don’t know his name, but I don’t need to. We have formed a bond of mutual caring that is beyond names. Once, he was having difficulty reaching his cubby to get his clothes. He had a bag of some sort that he had to wear as part of his cancer treatment and needed me to help him get his clothes of his cubby. Then there he was in his underwear and there I was, not even knowing his name and it was OK. This may seem like nothing to you, but I am childhood sexual abuse survivor, so it has a lot of significance to me. For a lot of my life I have been scared of all men because of what happened to me. I can’t tell you how many times I was abused or by how many men—because after a while it just seemed like every man or boy I came into contact with was out to get me. There were times during my childhood when I felt like I was wearing a sign because seriously it was my babysitter’s son, another babysitter’s border, boys at school, my pediatrician and then blurs of unnatural touch and tastes that finally culminate with my own father. So for me to be OK with helping a man in his underwear is huge to me. But see, we’re more than man and woman, abuse survivor and whatever kind of survivor he may be from whatever life experience he has now. We are cancer patient and caregiver and it’s OK.
This is what I’ve seen repeatedly throughout this experience. There is solidarity amongst those of us in the cancer and cancer caregiving community. We are fighting the same battle against cancer while struggling to build and maintain some type of normality to each of our situations. We see each other in those waiting rooms that we get to know each other on some level that is deeper than race, religion, personal history or anything else. We are as God sees us; human at the very core of our humanity, all members of the same family; dysfunctional, yet still somehow able to see beyond that dysfunction and all the things we allow to separate us from each other and simply be OK.
These are other people who have heard those same words and know what it’s like to feel slammed back and forth by info-dumps of information about side effects and probabilities, along with hours spent in waiting rooms during surgeries and treatments. Cancer has come into their lives as a defiant and unwelcome guest, just like it has come into yours. No one else can possibly know what it’s like unless they experience it themselves. So you find yourself becoming close to a bunch of strangers. You may have been an introvert all of your life, reserved or like me a survivor of one of life’s many hard knocks and suddenly there you are chatting with these folks as if they were long time friends. There is a shared respect and camaraderie that exists because you all have been or are going through hell or you are watching someone you love go through hell. We discuss the weather, treatments, we work on one of the puzzles that is always available to help pass the time or we watch TV. It doesn’t matter, because we’re sharing the same experience and we’re fighting and winning and in some cases losing, the toughest battle of our lives.
This is something profound that I have learned in the many months I have been a caregiver. I started this experience feeling very much alone. I had people in my life that weren’t understanding or caring about my situation and I had those who backed away. I do not feel alone at all now, and I know my mother doesn’t feel like that either.
We are part of a community that is there to help lift us up when we are down, laugh at jokes that only another cancer patient or caregiver would find funny, explain information to us that we’ve already heard fifty times or sit silently beside us when we are too weak to do anything else. We are not alone, and that is a powerful and wonderful thing to know, because it gives us hope and it gives us support, which we pass on one to the other in solidarity and strength.
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Moving piece. I can feel all the humanity from what you have had to endure. My heart goes out to you. You are very special.
Thank you so much for your blog! It gives me great insight into the caregiver’s perspective. I will think of it every time I go into my oncologist and chemo treatments. The following is a perspective of the patient.
May 28, 2009. That is the day my life changed forever, in ways I would not fully realize until later. I went to the emergency room for shooting pain I had been having in my left abdomen. It had been constant for around 6 months, and I just couldn’t stand it anymore. Of course, the Doctor has given me a shot of morphine, and taken all the cat scans and blood tests by now. I will always remember her, as she played such an integral part of this life-altering event. She enters the room, and she has changed. Before, she was jovial, talkative, and upbeat. What I had just told my husband was a very nice Doctor, and that I liked her a lot. She has now turned into a serious, sedate, and shy Doctor that won’t even look me in the eye. I knew immediately what was wrong. How did I know? Because my father just died of cancer in 2006, and my mother was currently undergoing chemotherapy for lung cancer. As well as all of my grandparents and various aunts and uncles, paternal and maternal, had all died of cancer. She slowly sat down in the chair and placed my medical file on the counter. She still wouldn’t look at me. I immediately went into my caretaker mode. After all, that’s what I was used to doing, having helped nurse my grandmother through cancer for over 5 years, until she finally passed when I was 13. I told her “it’s ok”. She finally looked at me, with eyes that had gone blank, but deep inside, I could see she was ready to crack like an eggshell. She asked “what’s ok”? I said “I have cancer, don’t I”? She cracked. I saw the tears welling in her eyes. I said “it must be bad, if it’s making you cry”. She still hadn’t answered me. I patted her on the shoulder, trying to comfort her the best I could, and told her it was ok. I told her I always knew I would get cancer, with a family history like mine, who wouldn’t. Maybe that’s why it took me so long to finally go to the Doctor for my pain. Maybe unconsciously I already knew? I somehow had become the caretaker, and was no longer the patient. She looked down again, unable to look me in the eye. As if I was already dead, and to me it felt like she was afraid I was contagious. She said, “I’ve called in the on-call oncologist, I believe you have Leukemia”. Now I understood the look. As if I was already dead. For a brief moment, I thought I was too. After all, I could live without a spleen, or a lung, but not without my blood. The human body can’t function without blood. Before I left, the Doctor sat down and talked with me again. She apologized for how badly she handled telling me the results of my numerous tests. I reassured her it was fine, if she had told me coldly, like most Doctors, it would have been harder for me to hear. She explained that I was her first patient she had ever diagnosed with cancer, and gave me a big hug while those silent welling tears slipped down her cheeks. She hugged me because she needed the comfort, not because I needed a hug. I couldn’t feel it at the time, the shock of it all encased me in a bubble, where nothing could touch me.
Nine days later, after a bone marrow biopsy, I was officially diagnosed with Stage 4 Chronic Lymphocytic Leukemia. Even though you don’t think it could get any worse, it just exploded. My oncologist explained that it is incurable. He said I was very rare, that 90% of CLL patients are geriatric. I was only 37. He said we would treat it with chemo, and I could hopefully achieve periods of remission where life would be good. I could get remission, and it might last anywhere from 1 to 5 years. He was very positive and upbeat, and seemed to think I should be excited about it. Excited about getting anywhere from 1-5 years free of chemo? Excited about visiting the Doctor’s office weekly and monthly for blood tests to see if the monster has returned? That’s what the cancer is to a patient, a monster that has invaded your body, that you can never be clean of again. Like it’s a living beast you share your body with. Excited about living with the all consuming fear every day that this is the blood test that will hand me a death sentence? Excited that this might be the blood test that sends me back to the chemo cycle, that makes me accept the poisons into my blood again? Over and over for the next (hopefully) 40 years? I found it hard to be upbeat and excited by that.
However, I took my cue from his upbeat attitude. At that point, you are looking for any clue on how to handle this situation. If he can be that happy, I have to mimic him. Just like we learn as a child through the actions and examples of our parents (whether it’s to be like them in admiration, or to never be like them in disgust) I was learning through my healthcare providers how to act and be the good patient. And 8 months later I found myself actually believing him, when he confided in me that he had lymphoma, and had been fighting it for years. But that’s another story……
So, I read and studied everything I could about my disease. You can’t fight a monster you don’t know. It’s like preparing for war. If you don’t study the enemy, how can you know when to attack, or when to sit silently behind the battle lines and wait for your best moment for success?
All the time, the patient is burying their feelings deeper and deeper in order to seem reassuring and confident to their loved ones. In the hopes that instead of acting happy, eventually if you pretend long enough, the power of positive thought will make it come true, and you will miraculously become the act. You break the news to your loved ones, presenting it in the most positive light. As if you have already slayed the monster, and there is nothing for them to worry about. The guilt you feel, like you are lying to them. But you have too, because that is what they need. They need to believe that you are going to be fine, and beat the monster. While the whole time you are feeling like you are slowly dying. But guilty because of the pain and worry you are causing them. So it becomes the patient’s job to reassure the loved ones that we will be fine. Even if it means hiding what we really feel. Even if it means hiding how sick we really are. Even if it means turning your soon to be baby baldness into a fun game, and telling your 9 and 11 year old kids that they can draw anything they want with markers on your bald head, and keep it decorated until the hair grows back, just to make them smile. While inside you are crying and raging in anger that you have debased to this level. Even when it means forcing down half of that soup they bring you, when every bites tastes like pure table salt and burns with every swallow because of the thrush you can never get rid of. Knowing that afterwards, you will go to the bathroom where you will try to be quiet as it comes back up, because your loved ones feel better if they think you can eat and hold down food. Even when you get stared at like you are a leper every time you try to go out in public, because you have to wear a face mask. Because your immune system is so low, a common cold can kill you. When you are stared at like you are lazy, because you are too weak to walk far, and making it from the car to the door where you can get a driving cart feels like you ran a marathon. But they don’t know that. They can’t see the monster. They can’t see any casts for outside disabilities, so they assume you are too lazy to walk.
Where you memorize and joke about having your Medical Record Number memorized, because you’ve been hooked up to so many bags of poison, and they have to insure you are really the person they have to poision, so they don’t accidently kill the person that hasn’t already been given a death sentence. As you sit there for 8 hours at a time, knowing that you will get sicker.
But we do it all with a smile and a joke. Because it makes it easier for our friends and loved ones to accept. Because they believe the act. Because the patient feels guilty and ashamed for causing so much concern and pain to your loved ones. Because always in the back of the patients mind, is the thought that if I die, I will cause my family tremendous pain. And I feel guilty for that, so I must comfort them while I am still on this earth to do so, even though if it means acting upbeat and happy, while inside I am angry at life, selfishly resentful at times, and sad.
We protect our caretakers from the most painful truth of all, which is our true feelings.
Lisa, thank you so much for sharing what you’re going through here. Life is funny, you and I met playing Farmville or some game on Facebook and had no idea that each of us was going through our own battles with cancer. It makes me feel so good and so humbled that you felt able to share your feelings and your story here. We all go through this battle in our way. My mom and I have always been really close–plus I’m an adult child taking care of a parent, so it’s different–so she doesn’t hide anything from me, and there have been times when I felt like I was going to crack up because of the stress of dealing with someone who was so sick they could barely stand.
There truly is no aspect of this that is easy, but I am here for you whenever you need me. Feel free to continue to post here or you can message me in private. Since I can’t be there in person to help you, I can be here to listen whenever you need a friend.
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This is how recovery feels. A group of people that would not normally have an opportunity to mix or get to know one another, find comfort with each other because of shared circumstances in their lives.
It’s another one of those unexpected blessings. A Gift.
Love you honey