Lessons I learned on our journey with cancer

Written by Jenny Jackson

What is a friend?

Ask ten people and you will probably get a different definition from each person. When you start out in grade school you love to tag on the title “my best friend”. Somehow that makes your life sound so much better. At that time in your life, it usually means someone who will always play with you. Go on into high school, then adult life and unfortunately the depth really doesn’t change that much. It still usually revolves around someone with whom you hang with and spend endless hours talking.  It wasn’t till our journey with cancer that I had a “heavy revy” (heavy revelation) that many of the people that I had so loosely used the word friend on were really nothing more than a semi-familiar acquaintance. In the Bible in Proverbs 17:17 it says a friend loves at all times. In Proverbs 27:10, it says you would be wiser or better off to have a friend close by when disaster strikes than to have a brother far away. Then it says that Jesus is a friend that sticketh closer than a brother. We have the preconceived idea that a friend is someone that is going to be beside you no matter what comes your way. When we were so dazed by cancer coming into our lives, and our world was spinning it was only then that we realized who our real friends were. Our real friends stepped in to gently and objectively make sure we stayed focused, and they thought of all the little details. They did our thinking for us on minor things so we could focus on the main thing and that was Larry’s health. They thought and acted on the financial stress they knew we would be under. The most amazing thing was people we had known and thought we were close friends with; some just were not there for us. But God sent several new acquaintances to us that absolutely walked and sometimes carried us through parts of our journey. Our family was in Oklahoma so we proved Proverbs 27:10 to be true. It was better for us to have a friend close by than to have a brother far way.

One example I will never forget is Larry was to start his first chemo on December 26th.  Everyone knows just keeping up with all the scheduled Christmas parties with work, church, and both sides of the family is hectic just by themselves without adding anything extra to the mix.  I had a new friend named Jami who had Christmas plans with her husband, boys and their families. Her boys were young but she told her boys their Christmas plans would have to be put on hold till she returned from our home.  She told them nothing about their Christmas was as important as her helping us.  She made us a “Christmas Breakfast Casserole” for Christmas morning, and she came and taught me how to keep up with people by email. This was her idea to make my upcoming days a little easier to communicate with people.  At that time I knew very little about email. She showed me how a real friend acts. It was a lesson that I have always remembered, not from what she said but what she did. I can also give you examples of people we had known a long time that never went out of their way to make a phone call, drop a card in the mail, or helping us with the huge financial burden we were facing. I remember one man at church that thought he was really doing something, and he would come up to us every time while he was leaving and say, “Now you call me if you need anything”.  I learned several things from him. I learned he really is just an acquaintance that really didn’t want to be bothered unless necessary. I also learned to try to place myself in the other person’s shoes. Generally, people do not like to ask for help, it is embarrassing, at least for people who do for themselves. From that I also learned when someone is going through something, I need to go out of my way and go the extra mile for them. It will mean everything to that person hurting. Treat people the way you would want to be treated. There is a saying, that people may not remember what you say but they will never forget how you made them feel. Be it positive or negative.  Be a giver and go out of your way to give because you may be on the receiving end tomorrow. You will reap what you sow, that is a law of nature.


My thoughts on DNA

DNA is such an important element in life today not just in solving crimes.  We leave our DNA on everyone we come in contact with. Are we leaving it in a finger or hand print from reaching out to them and possibly getting dirty by helping them; or is it in a footprint from stepping on or over them.  I hope my DNA fingerprints are seen gently all over people from my involvement with them.  If that is successful then I have accomplished part of my purpose here on earth.

Your walk talks, your talk talks. But your walk talks more than your talk talks.


WORDS

By Jenny Jackson

Above all else guard your heart for it affects everything you do.  Proverbs 4:23

One of the most valuable lessons I learned while going through cancer is how powerful words are that are spoken to you. Like golden apples in silver settings, so is a word spoken at the right time. Or you could say it this way; like apples of gold in settings of silver is a word spoken in right circumstances.      (Proverbs 25:11) There is much to learn from what that it is not saying likewise. If you say the wrong thing to someone at the wrong time it can add much grief and harm.

When you are going through something like a diagnosis of cancer at some point your mind is just a battlefield. You usually pass through stages and you try to come to terms with that which is taking place. You are trying to tell yourself this isn’t really happening. When the doctors give you the report and it sounds so devastating when they place a stage 4, before it, or they speak of the treatments. You bounce between it’s a bad dream, to he will beat this, to what if he doesn’t make it, what will I do? You have not got your stable footing established yet. I will never forget a friend who had just heard Larry had cancer and I ran into him at a shopping center. He said Jenny I just heard about Larry having cancer. I’m so sorry. What kind of cancer does he have? I replied he has 2 types of cancer; he has Large B-cell lymphoma, and Hodgkin’s disease. I barely got it out of my mouth and he said, Ahhh man I am so sorry that lymphoma is the worst there is to beat. You know last year I had an uncle and he got sick and the doctors told him he had lymphoma and bam 2 weeks later he dropped dead. I have to ask you, now does that sound like a word spoken at the right time, or at the right circumstances? We laugh about it now and I’m sorry to say that it was only one of many stupid things that were said to me. He wasn’t mean-spirited, he was sincere but he was sincerely wrong. In that particular case, I was so angered that he would have the nerve to say that to me I did not know how to react so I gave him this free look smiley and turned around and walked off thinking, “How dare you say something like that to me when I am trying so hard to be strong.”

Another thing found to add stress to me was people coming and telling me all these other homeopathic ways they “heard” cured cancer. They would tell us about a treatment we ought to try down in Mexico people were taking, or a heat therapy in Germany that has been proven to be successful in curing cancer. Unless you have an abundance of money all of these things are going to be out of pocket and not covered by insurance. If the person with cancer does not have deep pockets don’t throw out a scenario that is unattainable to them. There is not benefit in doing so. We prayed for direction. We purposely sought out the best doctors possible with success. After we got into M D Anderson we still had people trying to get us to check out other things. We determined we trusted these doctors and we were going to let them treat Larry and owed them the respect to follow their protocol. We have since tried to say only positive things to other cancer patients and families that will help them believe in a positive outcome of the type of treatment the person has chosen to receive. Give them words of hope to build upon, or good words to play over in their minds.

Last but not least in the Christian world the beliefs go from just the basic hope and trust in God to making it a potion. While I believe in miracles, I do not believe in magic. I do not believe there is any act that is a magic potion that you do every morning or three times a day with your back to the sun and with your head tilted just right chanting certain words that will make your cancer disappear. While that example may be a bit exaggerated, in some of the cases we were told it isn’t by much. The most hindering stress that has been added to us has been by well-meaning Christians telling us a formula which they have made their doctrine; as to what will work that they have never had to prove themselves in such circumstances. We are not God. Don’t feel obligated that you have to be their spiritual backbone, and have to make it all spiritual. Instead of so much talk about some deep words obligating God to make your words powerful but sweet. Words such as we are praying and believing with you; Praying for God’s will in your life;  you are constantly in our thoughts and prayers; We can’t wait to see what God has in store for you on this journey. Little is much at a time like this. While God does not cause all things, he does work through them. Make sure your words are sweet like a medicine to the soul to whom you are speaking. The best thing you can do for a cancer patient and family is to make them forget “cancer” is in their lives if but for a moment, a minute, or a day. Make them laugh, and feel normal like before cancer came into their lives. It is not disrespectful to have a conversation with a person that is sick that is not all about the sickness. I can tell you very few people have the ability to do that and it is wonderful to be a participant when they do come along. I know 2-3 people that I can call or send an email and tell them Larry needs to be sidetracked. He is feeling down can you call him or have lunch with him? They can mentally whisk him away to a “deer stand”, or to lake fishing. That my dear is a good word spoken at the right time.

To sum up, things I learned and try to remember is:

  1.  Your diagnosis label does not define you nor your lifespan.
  2. People with good intentions will place high demand on you giving you things to read, or listen to or quote because of the unsettledness of their hearts and it can cause anxiety to you and heaviness to your soul.
  3. Unclutter any family or friends who while well meaning will suck the life from you. Your main objective now is to protect your mind and the mind of the patient.

Come to grips with the facts that life is not the way it’s supposed to be. It’s the way it is. The way you cope with it is what makes the difference. I know many reading this will well understand the points I have written. If I can help you prioritize and help you carry your load on the journey then the words have accomplished what it was suppose to.


 What to Say when You don’t Know What to Say:

You’ve just found out someone has cancer, or you have just found out they have been told to call in hospice. You know the person and you can’t just ignore them and their circumstances but you don’t know exactly to say either. What do I do? Do I act as if my life is so busy I haven’t had time to respond? Frankly anyone of us could use that excuse on any given week. Your feeling really sad and worse you are feeling so bad for the spouse.

You feel so inadequate because your heart is telling you to reach out to the patient/and or family but you feel totally inadequate. Our heart wants to help but the vocabulary isn’t there.

Very few people are good at expressing themselves at a time like this. It’s not your fault. You cannot practice the feelings of loss ahead of time. Experience with a previous death doesn’t count as each death affects us in a unique way. I hope these recommendations will help you to express your feelings.

Be a grown up, even if you don’t feel like one, and as soon as you hear about the death, call, write a note or visit the survivors. Forget about being eloquent. Simply say what is in your heart. Your feelings will be written on your face and heard in your voice.

Before you express anything, put yourself in the survivors shoes. While the patient’s pain is gone, their family may not think they are better off” dead. “Time heals all wounds.” “You’ll have other children.” “He’s in a better place.” Likewise, the parents of a child, even an unborn one who has passed on, may react negatively if it’s inferred that a precious little life doesn’t matter. The comment of “he’s in a better place” can wound survivors. The only “better” place might be close by the survivor’s side.

A simple, “I’m so sorry for your loss”  “Please accept my sympathy” is always appropriate. Do not say, “I know just how you feel.” You cannot know how others feel when they grieve, even if you’ve been through a significant loss.

Make the most of a hug or a handshake. Sometimes words fail. Sometimes at a death, words are unnecessary but a touch or a good hug can communicate deep feelings. It’s ok to cry, too, because you’re grieving. Of course, you were not as close to the loved one as a family member, but this death may bring wonderful memories of someone with whom you had a close relationship.

If it is comfortable don’t be afraid to call them by name. That only reflects how special that person was and still is to you. Family members appreciate hearing how important their loved one was to different people.
Don’t avoid talking about the person even if it is comical, laughing is not disrespectful, many times it side tracks their grief and is exactly what is needed but be sensitive of course. Be ready to sit and listen even if the surviving family wants to talk about the death, including shocking details. “Why wasn’t she healed?” “Why didn’t he stop smoking?” “Why didn’t she get help for her drinking?” “Why didn’t she call if she was that depressed?”  Unless you truly are able to, don’t provide answers. There are some things that only God himself will be able to answer.

Don’t offer comments or observations on death and dying, unless you know for certain that the survivor will appreciate your thoughts. Rather, if appropriate, ask questions in a gentle, quiet voice. If you know the person had made their heart right with God, and was ready to pass to their eternal home comments about that is usually encouraging however be sensitive. Sometimes the remaining family members are still working through their stages of anger. They may even be angry at the person for getting sick or dying this too is normal and is something they must work through so many times less is better.

Be careful and considerate on feeling like you have to have a scripture or preach a mini sermon on why you think this happened or life after death. Don’t exploit the tragic situation for you an opportunity to preach. This is about the patient and family and is not an open opportunity for you to show your knowledge of the word.

Stay connected with the survivors. They may not feel like talking or reaching back at this time but if you occasionally make yourself available on down the line they may.

To me one of the most empty things that were said to me was “Let me know when I can help.” most people think it’s polite to offer, but don’t actually want to be of service. Don’t say that. Give it some thought ahead of time, and be creative by making suggestions for concrete ways to help. “Mind if I walk the dog for the next few weeks while you have your hands full?” Or, Give them a gift card to help with their expenses, or mow their lawn. Look for ways to say, “I remember.” Buy a card put it in the mail. Send an email and share a silly joke. That may be just what they need even if not acknowledged at that time.  If you stop in at their home keep the visit short and at the front door they may not be up to talking yet. Don’t share a deep discussion or conversation. They very well may still be trying to accept this new reality. Instead, share memories and chat about the “good old days.” You might want to recount the good times between you and this friend. Or share something that became a life-long joke between you. I remember when Pookie was first diagnosed I went to some friends of his and told them don’t think you have to talk about his cancer. Talk to him about fishing, hunting. Take him to that place of memory you once shared. If you are use to telling him jokes, think ahead of time and come and tell him jokes. Help us feel normal if but just for a moment. Help us forget cancer for just one moment. We welcome it and to us it is not disrespectful. Keep it as normal as possible.


The Things I Wish I Were Told When I Was Diagnosed With Cancer

Your relationships are about to change. All of them. Some will get stronger. They will probably not be with the people you would expect. The people you want to handle this well might not be able to for a variety of reasons. Some of the reasons will be selfish. Some of them will be entirely innocent and circumstantial. All of them will be forgivable because no one plans for cancer. Carrying bitterness or anger won’t help your recovery. Fighting for anyone to stick with you won’t cure you. Those who can, will.

You will be determined to have more energy than you do. You will convince yourself that you are thinking straight, are able to handle all of this and do not need anyone. You will run out fuel. Your body will change first and your mind will follow. You won’t lose your mind, memories or sensibility. It will all come back. But, you will be different. You will never have the same sense of self. You should embrace this. Your old self was probably really great. Your transformed self will be even better. Give into what is happening and trust it.

You are going to feel fear. Even if you are normally stubborn, confident and seemingly invincible you will finally find yourself admitting that you are scared of something. Cancer is scary and incredibly confusing. The unknowing will eat at you worse than the disease itself. You’ll need distractions. Music and sleep will probably be the ones you resort to most. Reading will become difficult. So will watching TV or movies, having conversations, writing and basically everything else. They call it “chemo brain” for a reason. You will feel normal eventually. Just a new kind of normal. When you feel afraid let yourself lean on those around you. Cry. Be vulnerable. You are vulnerable. There will be time for strength, but never admitting weakness will cause anxiety to mount and your condition to worsen. Let it all out. Yell if you need to. Sing when you feel up to it. Sob uncontrollably. Apologize for your mood swings. Treatments and prescriptions will often be the cause of them. The people that love you will understand.

The people that love you will be just as scared as you are. Probably more. They will be worrying even when they are smiling. They will assume you are in more pain than you are. They will be thinking about you dying and preparing for life without you. They will go through a process that you will never understand just like they will never understand the process you are going through. Let them process. Forgive them when they don’t understand. Exercise patience when you can. Know that those that were built for this will be there when you get to the other side and you will all be able to laugh together again. You’ll cry together too. Then you’ll get to a place where you will just live in the world again together and that is when you know that you have beaten this.

The sooner you recognize that you are mortal, the sooner you can create the mentality for survival. There is a chance you might not make it. Just like there is a chance that you will. Don’t look at statistics. You are unique and what is happening inside you is unique. Your fight is yours alone and there are too many factors to compare yourself to others that have had your condition. No one will want you to think about death, but you won’t have a choice. You will think about it from the moment you are given your diagnosis. Come to terms with it. Calmly accept it. Then, shift every thought you have into believing that you won’t die. You are going to beat this. Your mental focus on that fact will be more powerful than any treatment you receive.

Your doctors and nurses will become your source of comfort. You will feel safe with them. If you do not feel safe with them you need to change your care provider immediately. There is no time to waste. This shouldn’t be a game played on anyone’s terms but yours. When you find the right caretakers you will know immediately. Do not let insurance, money or red tape prevent you from getting the treatment you deserve. This is your only shot. There is always a way. Find those hands that you trust your life in and willingly give it to them. They will quickly bring you a sense of calm. They will spend time answering your questions. There will be no stupid questions to them. They won’t do anything besides make you feel like you are the most important life that exists. They will never make you feel like they don’t have things in control. They will be honest and accessible at all times. They might even become your friends. You might celebrate with them over drinks months or years after they have cured you. They deserve your gratitude, respect and appreciation daily. If you get upset at them during treatment know that they’ll forgive you. They get that you’re going through something they can’t imagine- but they understand better than anyone. They see it every day and they choose to be there because they want to make the worst experience of your life more tolerable.

You will need to find balance after treatment. Start by seeking balance during treatment. Eat well. Sleep well. Listen to your body. Explore meditation. Experiment with new forms of exercise that aren’t so demanding. Embrace massage and other body therapies. Go to therapy. A therapist will be able to guide you through your journey in ways you could never fathom. Do not be too proud to speak to someone. You cannot afford to store up the intensity of the emotion that comes with fighting a life-threatening illness. Let it out for yourself. You will begin to hear your voice changing. That voice is who you are becoming in the face of mortality. Listen to that voice. It will be the purest, most authentic version of you that you have ever known. Bring that person into the world — strengths and vulnerabilities and everything between. Be that person forever.

You will inspire others. It will feel weird. People you haven’t spoken to since grade school will be in touch. Ex-girlfriends, former colleagues… even people you felt never wanted to talk to you again. The influx of interest in your seemingly fading life will be greater than any living moment you have ever experienced. That support is what will shift a fading life into a surviving one. Be grateful for every message. Be appreciative of each gift and each visit. There will be moments where all of this attention will make you feel lonelier than you have ever felt in your life. In a hospital room full of people with messages stuffing your inbox, voicemail and mailbox you will find yourself feeling completely alone. This is when you will realize that you could afford to have a stronger relationship with yourself. That only you walk this earth with 100% investment in you. Make the investment and use this as an opportunity to reexamine your self-worth. Love yourself more than ever and recognize how much love there is for you in the world. Then start sharing that love. You will come to see that even when you are the neediest person you know you can still be giving. Giving will make you feel better than taking.

When you get to the other side you won’t believe it. They will tell you the disease is gone. Everyone you know will rejoice and return back to their lives. You’ll constantly wonder if it is coming back. Slowly this feeling will fade, but cancer will always be a part of you. It will define how you see the world moving forward. You’re going to feel like the future is a funny thing to think about because the present is going to suddenly seem incredibly important. Keep moving. You’ll be more productive. You’ll understand who truly loves you because they will still be there. You’ll want to meet new people that connect to the newly evolved version of your old self. You’ll want to let go of those that don’t “get” who you are now. You’ll feel a little guilty doing it. Then, you’ll move on. You don’t have time to waste. The greatest gift you’ve been given is that you now understand that and you’re going to make the most of every second. You’re going to be the most passionate person you know going forward. Translate that passion to a greater purpose. Be fearless again.

I was diagnosed with leukemia at the age of 27. Now 28, I have been told I have no trace of the disease in my body.

Jeff Tomczek is a freelance writer


 

Cancerhood:

Like many other places people do not choose to live, the cancerhood is a tough neighborhood with grim statistics. If you live in the cancerhood you are sometimes said to be “battling” it or perhaps learning to “accept” it. The battle metaphor can leave the false impression that some people in the cancerhood try –but fail– to fight off the disease. But you can’t bootstrap your way out of the cancerhood. Not beating cancer is as much a failure as not winning the lottery. And to accept living in the cancerhood seems to suggest that you are okay with it somehow. But you accept living in the cancerhood the way you accept being caught in a cold rain with a book in your hand but no umbrella. You hunch, cover as best you can and run for shelter.

Outside of the cancerhood time feels faster or slower, it “flies by” or “crawls forward” depending on the joy of the moment. But in the cancerhood time doesn’t feel relative. Time “sweats” and “shivers” in a series of “let’s get this over with” moments. Time idles in a forgettable haze. In the cancerhood time is wasting time thinking about trying not to waste time while wasting time. Cancerhood time is time spent thinking of ways not to think about the test results that will tell you if you will be spending more time in the cancerhood or possibly less. Cancerhood time is time spent worrying about work, money, and how it will affect your children, family and friends if you die.

Cancerhood with a capital -C- like Brotherhood or Fatherhood, is a lens through which you see people and they sometimes see you. Not everyone all the time, at least not if you have your hair, your weight, and a decent pallor. But when it is more than a passing encounter with a stranger, eventually you tell them even if they’d never know the difference. Maybe it’s like a homosexual coming out of the closet; after a while trying to hide the fact is just too much work, and like sexuality cancer is a part of your identity that is complex, on your mind more than you’d like, and not of your choosing.

Sometimes when you tell people that you are a cancer survivor it evokes a facial expression that renders the Thomas Hardy poem , The Dead Man Walking. That’s understandable. And the news makes trivial some topics that moments before seemed important to them. That’s usually for the best. In any case, it is less awkward in the long run to be open about the issue.

The Cancerhood overlaps with and changes the way in which you see people and the world. Who wears a surgical mask to the grocery store, the pharmacy, on the bus, or to the holiday show at their kid’s school? Unless you are a doctor or a dentist in the procedure room, it is odd, distracting, and even alarming to see someone wearing a surgical mask. But that’s how it when your blood is not right.