Appearances

Due to the many meds I have ingested over the years since my transplant, I suffer from what my doctor calls esophageal spasms. Esophageal spasms are intense, take your breath away, severe chest pains. Typically I get them after taking pain medications. I don’t think my GERD can handle the meds and consequently my esophagus spasms.Thankfully, these spasms only occur occasionally. Unfortunately, last Friday I experienced “a big one”. The panic of the intense pain led me to take a trip to Urgent Care. To make a long, pathetic story short… One ambulance ride (accompanied by a fire truck), 5 EKG’s, many blood draws, IV fluids, a chest X-ray, a CAT scan, an Echo Cardiogram and a Stress Test later I was told my heart was fine (which I knew because I’d had a complete heart work up a few years earlier). Even more unfortunate, not a thing was done to help my esophageal spasms. At the end of the ordeal, to say I was frustrated would be a major understatement.

So here I am sharing another “series of unfortunate events” story from my life; not simply because I need to vent but because I know that I am not alone in my frequent frustration with my post cancer body and all it's failings. Having just celebrated National Cancer Survivor Day, it seemed fitting to write a post advocating for my long term cancer survivor friends. For those of you with cancer survivors in your life, I hope my perspective on the challenges of being a cancer survivor will increase your sensitivity as you do life with these amazing, courageous human beings. 

Here’s my point….Being a survivor isn’t easy.

Most assuredly, it beats the alternative, but still… life post- cancer has many challenges.

The kicker is, (at least for me), I SEEM completely fine. I live a really full life. I am active. I laugh a lot. I run, I exercise, I upcycle furniture, I do volunteer work that keeps me on my feet for many hours a week. I travel. I look well. I look healthy.

This is what you know about me….just what you see.

But here’s the reality of my life: I’ve had heart failure. I have serious GERD which has led to esophageal spasms. I have high cholesterol. I have osteoporosis and degenerative disc disease and am almost always in pain. I don’t hear well. I don’t see well. My memory stinks. I even think I have some PTSD. I have IBS and a very sensitive gutt. I don’t sleep well.

Sometimes I jokingly say “it stinks to be me”. Of course, that is not true, but here’s the reality of my daily life that sometimes leads to this exclamation…

·       * If we are in a large group most probably when you talk to me I don’t hear you very well. I have low tone hearing loss due to nerve damage from radiation.

·       * I have to hold the railing when I go up and down stairs in unfamiliar places because my depth perception is so shot I miss step easily. I have retinal damage from steroids that causes me to have distorted vision and black holes in my vision field.

·       * When I sit with you in a restaurant for more than a half hour my back is killing me. I don’t choose restaurants based on the food but the comfort of the chairs.

·       * My back pain requires me to walk more, sit less. In order to watch an at home movie I have to be able to lie down. Consequently, I might prefer you come to my house for a visit rather than me going to your house.

·       * When traveling with you in a car it is helpful if I can sit in the front and recline the seat, otherwise my back becomes extremely painful very quickly.

·       * I can’t take pain meds for my chronic pain because the meds aggravate my esophagus and stomach problems.

·       * Though desserts and rich foods are just as appealing to me as they are to you, if I eat them I most probably will get sick.

·       * When traveling I have to keep a pretty strict routine in order to be able to sleep. Even sleeping pills do not guarantee I will sleep and if I don’t sleep for more than one day I typically will pick up a bug because my immune system is easily compromised.

·       * I have to run and exercise regularly in order to keep my bones and joints in good health.

     * Despite my attempts at healthy living I still have high cholesterol, am pre-diabetic and have osteoporosis.

 My body, it seems, is prematurely aging. I refuse to give in to these challenges but instead, expend tons of energy fighting….fighting…fighting.

I know that looking at me you don’t see these daily challenges. In a way, I’m glad for that… but sometimes I’d like to remind you of my challenges because sometimes I just need encouragement to keep going.

I DESPISE PITY, but I APPRECIATE encouragement and empathy. I know I can’t expect you to fully understand what it’s like to be me. All I ask is that you not judge me, don’t second guess my motivations and please don’t assume that I am vane because of all the energy I put into staying healthy and well.

 

Some cancer survivors have challenges similar to mine; some have different challenges.  But this I know for sure-if you have had chemotherapy or radiation you WILL have challenges.

The road to good health post cancer is complicated and costly. Though well worth it, treatment leaves us with many negative consequences.

I guess I just want to send a reminder to anyone who loves a survivor; please increase your sensitivity towards the survivors in your life realizing that at times theirs is not an easy journey. They need your love, support, patience and understanding. They don’t want to be “special” but the reality of their situation is that sometimes they have no other choice. Give them the freedom and encouragement to be as normal as they are able but also respect and acknowledge their limitations (but don’t overreact to them). Allow the survivor the freedom to determine how transparent they want to be about their challenges. You may not have walked a mile in their shoes, still, try to be as compassionate and understanding as you are able.   

For survivors at some times life is easier than at others but no matter what, I am personally always thankful for the acceptance, love and companionship, despite my quirks, I receive from my family and friends. Thanks for loving me no matter what...

Our New Normal

Wow! It's sure been a long time since I've posted. I guess it's been awhile since my last "ah ha" moment. 
As I approach my 14 year post transplant anniversary I am surprised  to admit that all these years later I am still frequently reminded of all the good and bad that came from my cancer

journey. 
Currently I am determined to focus on getting some medical solutions to some of my post cancer ailments; specifically sleep problems and pain. In my quest for enlightenment on these issues I came across the following article on The National  Comprehensive Cancer Network website. 
If, like myself, you occasionally or frequently struggle with post cancer feelings of isolation and frustration I encourage you to read further. The concept of  Survivorship Groups is new to me and something I plan to explore, all these years later.
I will update you on my progress as I pursue solutions and understanding ...
I hope this article is as helpful to  you as it was for me. It is so darn nice to be reminded that we are not alone in our journey...

For Cancer Survivors, Normal Might Not Be So Normal

After cancer treatment, patients find they have to adjust to a "new normal." The cancer journey can be a long, arduous one, and cancer survivors often end up with a lot of baggage when it’s over. As a result, they usually cannot just pick up their lives and resume where they left off before the cancer began. Often, there are physical, emotional, cognitive, relationship, and financial issues that will create what experts call, a “new normal,” and cancer patients will need to learn to adjust before they can get on with their lives. “Many patients with cancer have unrealistic expectations about their lives after cancer,” says Sloan Karver, MD, a palliative care physician atMoffitt Cancer Center. “They expect to bounce back to where they left off and return to their normal lives and jobs, but that is not always possible. Their bodies have been through major challenges, and they must give them time to heal.” Dr. Karver says that most patients never totally recover from the physical and emotional effects of the cancer experience. “It leaves devastating marks on your being,” she says. Elizabeth A. Davis, MD, a survivorship doctor at Massachusetts General Hospital Cancer Center recommends that people try to take time off during transition – the time after treatment –to better cope with the issues that people face. This is really when patients need time to recalibrate physical and emotional health, relationships, and expectations. Transition: An Emotional Rollercoaster After you were diagnosed with cancer, people rallied around you to help you defeat cancer. Doctors, nurses, technicians, dieticians, social workers, family, friends, and others all focused on helping the patient through arduous cancer treatments. However, that support system ends with the treatment. More than 1 billion people are diagnosed with cancer each year, and there are nearly 12 million cancer survivors. There are just too many people with cancer for every patient to remain under the routine care of an oncologist once treatment ends. The oncologist will schedule regular follow-up visits: annually, every 6 months, maybe even every 3 months depending on the cancer, but your routine medical care reverts to the primary care physician when cancer treatment is finished. It’s not surprising that you feel totally abandoned when treatment is over, and that support system moves on to fight the next patient’s cancer. You might feel abandoned, alone, and out of sync with the rest of the world. You might feel that no one understands your cancer experience. This aloneness is similar to what a soldier feels when upon returning from battle. Not quite posttraumatic stress disorder, but a feeling that no one will understands what was just survived. “When people are diagnosed with cancer, they are in shock. They might get depressed, but they rally, and at the end of treatment, when they go from being seen daily, weekly, or every few weeks to not being seen regularly, they suddenly feel alone and abandoned. There is an overwhelming feeling of aloneness. “I think that is when many patients truly start emotionally processing what happened. And they mourn the loss of care,” Dr. Davis explains. Adding to the loneliness is the notion that you are the only person in the world who feels this way after cancer treatment. But you are not. Just about everyone who has been treated for cancer goes through this transition to a new life after cancer. And it’s an emotional roller coaster, because all of the emotions are at full throttle: anger, anxiety, fear, depression, guilt, loneliness, sadness, etc. You are embarking on a new cancer journey, and you will need to address the emotional issues, and physical and cognitive deficits during the transition before you can begin your life after cancer. Everyone carries baggage from the cancer treatment into this new life. If the cancer center has a survivorship program, enroll. This program is like rehab after heart surgery. The specialists there help cancer survivors through the transition period. If your cancer center doesn’t have a survivorship program, be proactive about finding help. This article will give some ideas about where you can turn for that help. First find a good primary care physician. You can return to the primary care doctor you had when you were diagnosed, but if you don’t feel comfortable with that doctor anymore, find a new one. Some people don’t connect with their primary care doctor after a cancer diagnosis, and it’s okay to find a new doctor. Find someone who works for you and will provide insurance referrals to the specialists you will need, such as physical and emotional therapists. Emotional Issues The transition period is full of emotional ups and downs. Understand that you are not alone, and seek out a new support system that can help you. Seek out help from physician specialists and therapists to help manage the emotional challenges you are facing. Depression, anger and guilt are common. People often become angry during the transition period. Sometimes they lose their faith. They become depressed and sad, and they suffer survivor’s guilt: “I survived so I’m supposed to feel happy and grateful to be alive, but I don’t. What’s wrong with me?” Don’t feel guilty. You are processing the terrible trauma you’ve been through. All of these feelings are normal. Unlike people who never had cancer, you know just how fragile the human body is and just how close death resides. This is an enormous emotional burden to carry. Another common feeling is anxiety that the cancer will return or that you will never feel good again or happy again. These are common feelings and a mental health professional can help you work through them. “A cancer patient has a heightened sense of awareness after they have gone through a cancer diagnosis and treatment. They are often worried about what various symptoms represent. Often, the primary care physician with the oncologist can tease out whether this is a separate condition or a result of cancer or cancer treatment,” says Dr. Karver. Cancer treatment often causes long-term fatigue that heightens the patient’s emotional state. “Fatigue is a huge issue even after treatment is over,” Dr. Karver says. “Many patients continue to suffer fatigue. They often take medications to control various symptoms, and these medications can cause fatigue.” A good night’s sleep can help, according to Dr. Davis. Yet, she often finds that people are reluctant to take medications that might help with insomnia, or to seek help for the underlying cause of sleeplessness, such as depression, anxiety, and the side effects of cancer drugs. But as a cancer survivor, you were willing to be treated with toxic therapies in order to save your life; why would you be reluctant to take medications that can help you live that life better? Why suffer emotionally? Dr. Davis will remind patients of the rigorous and debilitating treatments they received and will encourage them to take medication, if necessary, to help them sleep. “Deal with your sleep first. People come in with sleep and fatigue complaints. Sometimes your emotional state will improve if you can improve your sleep,” she says. Dr. Davis recommends multiple modalities, not just medication. Exercise is extremely important. If you can afford a personal trainer, get one. If you can get a referral for rehabilitation therapy, get one. If all you can do is go for a walk each day, go for a walk. You will feel better if you get up and move around. Take the dog for a walk. Take your kids to the park and play catch or Frisbee. Join a yoga class or a jazzercise class. Classes are good because you are with other people, so you are not alone. Join a pool and go swimming every day. Physical activity, especially done with other people, will make you feel better, and it can improve your overall health. The most important thing to remember is that you are not alone. Find a cancer survivors support group and set up a new support system with people you trust that you talk to often. Don’t isolate yourself. Feeling better after cancer is a process. Going through this process can empower you and return some sense of control over your life. Physical Issues There are many physical problems after cancer treatment. Cancer therapy has many side effects. Surgery can leave people disfigured, or they can suffer health problems, such as heart disease or infertility, years after treatment. Find out what problems lie ahead and be prepared. Sexual dysfunction is a problem that many cancer patients face at some time, according to Dr. Davis. Sometimes patients just have no interest in sex anymore. Sometimes, they suffer painful intercourse, or men cannot achieve an erection. Doctors are reluctant to bring it up, especially if a patient is single or if the patient doesn’t mention it first. Patients are embarrassed to talk about it. So, everyone keeps silent. Not a good idea. Not all sexual dysfunction can be addressed, but some issues can be. So, bring it up if the doctors don’t ask you about it. “Many people feel ashamed because they think they are the only ones who have this dysfunction. Also, they feel hopeless. There must not be any treatment because the doctor didn’t bring it up,” says Dr. Davis. Some people suffer low-grade infections, fungal infections or shingles, or respiratory problems that just linger on. Others have rashes, headaches and/or neuropathy (neuropathic pain), or lymphadenopathy (swollen lymph nodes). There is a long list of physical problems. Your primary care doctor can help here. If you lost a limb or have a physical disability, get into rehab and find the specialist that can help you cope with your disability. Put yourself on a list for a service dog if you need help with daily activities. Sometimes patients have unusual problems after cancer treatment, which might be dismissed because it is not a common side effect of the cancer or its treatment. Keep talking to your doctor until you figure it out. Dr. Davis treated one patient who suffered a constant itch all over her body, but she had no rash. Dr. Davis realized that this was a type of neuropathy, and when she was given medication for neuropathic pain, the itching went away. It was an unusual symptom, but it was real … and it was treatable. However, you won’t know what is treatable if you don’t ask about your symptoms. Cognitive Issues You would expect people with brain cancer to have cognitive problems. Problems with self-control, memory, inhibition, speech, attention deficits, etc. However, it’s not just brain cancer patients. Many cancer patients suffer cognitive deficits, especially memory loss and attention deficits. Remember chemo brain? Unfortunately, chemo brain doesn’t always go away when chemotherapy is finished. A specialist can do testing to help separate a cognitive problem from a psychological one. Speech and language therapists can help some patients with memory and planning that have undergone chemotherapy and/or radiation. Some survivorship programs have cognitive rehab that helps people develop organizational skills to cope with these deficits. Sometimes they go away, but it might take awhile. Relationships Relationships suffer after cancer treatment. Family, friends, even colleagues at work expect the patient to go back to “normal.” But your life will never be the old way again. Instead, there will be a “new normal.” Your relationships with family and friends will likely change, and unfortunately you will need to work to accept that. Talk to a therapist about it. If you are in a relationship, perhaps a marriage counselor can help. If you are working and can afford it, Davis recommends taking some time off or reducing your hours for awhile until you can sort out your new life. Pay attention to your physical and emotional symptoms and signals, and recognize that you are in transition. You might feel bad, but it will change. You gave yourself time to fight cancer, now give yourself time to heal. Rely on people you can trust and build a new support system. Reduce the intensity of your daily life and focus your energies on healing. Try acupuncture, yoga, exercise, therapy. If one modality doesn’t work for you, seek another. Take control. It’s your life.

Brave

Recently, due to my infamous bunion surgery I have been reliving and re-thinking some emotions I have not felt in a very long time regarding fear, courage and bravery.

 Mid November 2012 I began a journey that ended up being much more difficult than I anticipated. After living for many years with intense bunion pain I decided it was time to have my bunion removed. My big toe was surgically broken, straightened and re-set and my protruding bone was shaved off. The recovery was immensely painful. I was incapacitated for many weeks. My life came to a crashing halt as I was unable to bear weight on my foot for a very long time. To say I was discouraged would be an under-statement. The toll my inability to exercise, run or even walk briskly took on my psyche was great. Days turned into weeks, weeks into months; would I ever recover?

Slowly but surely I started improving and early in January my doctor gave me the all clear to bear weight, wear a normal shoe and begin working towards restoring my mobility. I was assured that my bone had healed and no activity was off limits as long as I could control the pain and swelling. I resumed some non-weight bearing exercising to increase my strength and looked forward to eventually getting on the treadmill to start some slow walking.

Last week the day I’d been waiting for finally arrived. I laced up my sneakers and headed to the basement to begin my rehab on my treadmill. Starting off very slowly, I began to walk. It felt SO good to be moving…for about 5 minutes. 5 minutes of pleasure followed by excruciating pain. After a second failed attempt to get back up on my proverbial horse the pain was more than I could handle and I had to stop. I plodded up the stairs, removed my sneakers and socks and was mortified to see a very obvious, pointed protrusion under my skin, near the base of my big toe. My supposedly secure pin had popped!

Fear and discouragement followed as I planned to see the doctor the next day for a consult and x-ray. The x-ray confirmed the pin had come out and needed to be removed. In order to avoid a trip to the surgical center, additional expenses etc the surgeon graciously offered to remove the pin right there in his office.

 As he explained the risks and benefits I was instantly consumed with overwhelming fear. Fight or flight? I decided that though fleeing was a  tempting option I really wanted to get this over with. If the doc thought he could do it right there and then I was game. My decision was made, but I was really scared. The PA shot me up with lots of Novocaine then left for a few minutes so the meds could do their thing.

Left alone in the exam room my fear increased. What was I doing??? I wasn’t in a sterile environment, surely I would get an infection. How will I drive home? I’m not even going to be able to get my shoe on to walk to the car. Fear turned to panic. I was doomed. I started to sweat and tear up until the positive self talk finally kicked in. “Where’s your faith girl? God has not given you a spirit of fear. Be brave and strong.  You can do this!!” That little voice was right. I was going to face this boldly and bravely and tell my naturally wimpy inclinations to take a hike. I purposed in my spirit to be brave.

As the procedure began I DID put on a brave face. I WAS optimistic it would be swift and tolerable. Within minutes I realized that was not the case. As the pain increase my courage decreased. As the procedure went on and on the mood in the room became tense. It was apparent all was not going as planned.  I slowly reverted back to a timid, scared posture. I began to cry. I was looking fear in the face and fear was winning. 

 After what I’m sure was at least a half hour the doctor proclaimed that he was sorry but he was unable to locate the pin without x-ray guidance. He stitched me up, apologized again and schedule me for surgery the next day. I left his office defeated, in much pain, scared and angry because I now had to do it all over again the next day. ( My only consolation was that he assured me I could have anesthesia with the second procedure)

Fast forward 4 days. I survived the surgery. Though initially quite ugly,my incision is healing well. I am able to wear a soft slipper-like shoe. I worked 8 hrs on Friday and am hopeful that the worst is now behind me.

Hind sight I find myself reflecting on the horrors of the past week and analyzing my conscious attempt at bravery. I must admit I have been beating myself up over my perceived lack of courage. In the midst of my crisis I claimed 2 Timothy 1: 7 

“For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.”  I wanted to be strong and fearless but alas, I had failed…..or had I????

What exactly does it mean to be brave anyway? I started thinking about the time in my life when I faced the ultimate fear…cancer. Was I scared then? You betcha. But did I run away? Nope. Did I face my fears? Well yes, I did. Maybe that is what it really means to be brave. Maybe true bravery is going to your chemo treatment even though you are petrified. Packing your suitcase for a 6 week trip to the hospital even though you are consumed with fear. Putting one foot in front of the other and doing what you need to do to find healing rather than hiding under your covers and hoping cancer will just disappear. Is it possible being brave and being scared go hand in hand?

 Perhaps last week in my surgeon’s office, though I was scared and crying, I was still being brave because I was doing what I had to do. Maybe I WAS courageous and I just didn’t realize it.

                                                         Brave= having or showing courage.

                               Courage= the ability to confront fear, pain, uncertainty or intimidation.

 Light bulb moment: Bravery does not require the absence of fear but an ability to confront our fears and do what we need to do to get past them. My fear is gone. I had my surgery and am now on the road to recovery. If I’d allowed my fear to consume me and keep from the surgeon’s office then fear would have won and I would still be in pain. But I did not. I got it done, despite the fear.

So dear cancer survivor friends, please take heart in knowing you are the bravest of the brave. You are strong and courageous despite your fears. One much wiser than me has said:

“I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.” ― Nelson Mandela

Cancer survivors, you are conquerors! Embrace your fears. Let them push you forward to the place beyond the fear. That place of healing and wholeness. Your fear is not a weakness. It is an outgrowth of your humanness. What you do with it is what matters. Fear will always be there but with God’s help and power our fears will push us to become strong and courageous!

   

                   "These things I have spoken to you, that in Me you may have peace.

      In the world you have tribulation, but take courage; I have overcome the world." 
                                                        John 16:33

My anti-resolution

Happy Belated New Year! I started thinking about this post in early January, but life happens, thoughts stew and marinade and I am just now getting around to putting those thoughts into words.

My 2012 was quite memorable; filled with adventure, happiness and some pain. I celebrated another year of cancer survival, another year of life, another year of marriage. We celebrated my son’s 1^st wedding anniversary and our 1st anniversary living back in Illinois.  We traveled many places I’d never been before, had many new experiences and met many new people. It was a good year (despite a bunion surgery that two months later still plaques me with much angst).

Like many of you, a few weeks ago I found myself “smack dap” in the midst of New Year’s resolution season.  I pondered whether or not I would bother with the mental exercise of formulating a 2013 New Year’s resolution. On the one hand, I think it is a bit silly to annually resolve to do this, that or the other thing only to repeatedly fail. Why put yourself through that? On the other hand, I am all for self- improvement, so why not give it another go? Maybe this year will be different.

As is my normal habit, I quickly decided not to bother with declaring an annual resolution. 

Unlike most years though, I surprisingly found myself spending quite a bit of time thinking about the whole concept of resolution making. Why are resolutions so hard to keep? The following definition offered some insight:

Resolution: the mental state or quality of being resolved or resolute; firmness of purpose.

So I concluded that keeping a resolution requires a certain mental discipline, a firm commitment to the cause, a resolute mind-set. It is not for the faint hearted or the wishy-washy. All the more reason for me not to bother…

If making a resolution was not the appropriate way for me to usher in the new year, I found myself wondering, “what is?”  

Upon further reflection I concluded that It seems to me resolutions are all made for the same reason; to improve one’s life in the new year. Since most of us don’t seem to have the necessary energy and fortitude it takes to do so, I would like to suggest that there is a better way. I would like to suggest we look at the whole idea of bettering our lives in the new year a little differently…

As a cancer survivor I have a unique perspective on new years. For me, each new year is truly a gift. I do not take 2013 for granted. I have been gifted with 13 years since my cancer diagnosis. 13 years that at one time I knew were not guaranteed. And so, it is easy for me to be positive and thankful as I enter each new year. But I also soberly acknowledge that if God is blessing me with the privilege of living another year He must have a reason, a plan, an objectives for me to meet in 2013.

 For me I believe that the best way to improve my life in 2013 is to take on an attitude of introspection. And so I will not resolve to accomplish any one thing in particular this year. Rather I will choose to get to know my God better and in turn get to know myself better. My resolutions will end up being whatever God so purposed for me to do in 2013. On January 1^st of each year I will not guess at what I should resolve to do in the new year, rather I will wait quietly for God’s still small voice to reveal one plan after another until December rolls around and I can reflect back acknowledging all the resolutions God had for me in 2013. Resolution I was not aware of on January 1.

And so, I will not resolve to do anything in 2013, other than listen to God throughout the year and be sensitive to what He is calling me to do in my home, at work, in my church and in my community. He will be the resolution creator, not me. Ultimately, doesn’t it make sense to let the God of the universal ordain my resolutions for me?

God, I love you, I trust you. I give you 2013. This year please change me into the person you want me to be. Make me more like you.  Give me sensitivity  to your voice. Make me your hands and feet. Use me to accomplish your purposes. Open my eyes, make your desires for my life clear to me.

Take away all the junk in my life that keeps me from clearly seeing your will for me.  I acknowledge that right now I do not know what you would have me do with this year but I will resolve to do with my hours, days, months and years  whatever it is you want. I gladly surrender 2013 to my loving Heavenly Father.

I am excited to see what you resolve for me to do with 2013!

Holiday Reflections

Two weeks ago a I chose to have bunion surgery on my left foot. The recuperation from this surgery, which involved breaking my toe and re-setting it, has been very painful and complicated. I have had many moments of questioning my timing-one week before Thanksgiving, 5 weeks before Christmas. (I will not bore you with the details, but less you think me mad, I will suffice to say I did have some valid reasons for doing this now.) Needless to say, this Thanksgiving was not typical, nor will this Christmas be the usual.

I was surprised by my own thought process during a time of contemplation at church yesterday. What surprised me was that in thinking over the past couple days celebrating Thanksgiving with my family I DID NOT find my heart overflowing with gratitude for all my blessings, I did not find myself overtly thankful for my loved ones all around me, for the good food and the stimulating conversation,for my home or my  job or anything else; What was I tearfully thanking God for in that moment?  My gratitude was as basic and as simple as is imaginable. I quietly prayed, "Thank you Lord that I survived Thanksgiving".  

You see, this year, because of my choice to have surgery, I was thrust head first into self- preservation mode for the holidays…

After over a week of intense pain, and agonizing pain med withdrawal symptoms I was concerned I might not have the strength to show up to Thanksgiving dinner at all. The prospect of me doing so in a matching outfit, with a touch of make up and a clear mind was looking even bleaker. 

I mustered every ounce of energy to be there and even arrived with a hot dish in tow (my sister helped me make it) and a smile on my face.  A comfy recliner became my best friend and I had an enjoyable, though exhausting day. I regret that I was not able to converse for long periods of time with my out of town family members. I missed playing on the floor with my grand niece and nephew; not participating in the kitchen chatter as my mom and sisters prepared the meal was also disappointing. Thanksgiving was different for me this year. This year all I did was relish in the comfort of my sister’s comfy recliner…

In retrospect, as I practiced healthy self talk about the reality of the situation, I realized that everyday should be thanksgiving and I can take time NOW in THIS moment to tell my family how thankful I am from them. I know that next year will be different and for me this was just a bump in the road. My window of opportunity for being thankful is not closed…phew! 

I was also reminded of how this Thanksgiving parallels, in many ways, a couple Thanksgivings I lived through during my cancer recovery. Yes, this feeling of being in self- preservation was not a new one for me.

If you are walking through your cancer challenge this holiday season I would like to remind you of some truths you probably know in your head but may need to remind your heart of… 

Keep your goals simple. If it is important for you to be “in the moment” then focus on that. If you are able to just show up you will be giving your family and friends the greatest gift of all…the gift of your presence

I don’t really know how to explain it, but I knew in my heart how much it meant to my family to see me physically present at special occasions, despite my illness. Your family doesn’t care if you arrive with a hot dish in your hand or even a smile on your face, they are just thrilled to have you in the midst of the festivities... flawed, tired, self-conscious, it’s all ok.  

You might be thinking," I’m not sure about that. Would they even really miss me?” The importance of you being there might not seem obvious. Family life can be socially complicated and you may feel lost in the midst of the laughter, football cheers, children playing round about you, but rest assured  your presence will bring  a certain unexplainable “all is well with the world” to your family get together.

Embrace what this year is and what this year isn’t. It might not be your most productive Christmas but it will be a Christmas that will change your life forever. Like it or not, this cancer experience is changing you and next year you will be a different person than you are this year…Different, yes and most probably better. You will have improved at not sweating the small stuff (‘cause you can’t) and will hopefully appreciate life’s simple pleasures all the more…like sitting in a room full of family members (or laying on the couch),smiling at the fact that you are loved completely and, in this safe, warm place you will always be at home.

Remember, your family hurts because you hurt and they love you unconditionally. How bout this Christmas you try to leave your unrealistic expectations behind? Let someone else make the fruit cake and give yourself permission to make caring for yourself your priority. After all, just showing up is a big deal!

             

 

 

           This Christmas and always I wish each 

              of you perfect peace and health from

                            my home to yours...

                         Isaiah 26:3 You will keep him in perfect peace, 

                       whose mind is stayed on you: because he trusts in you.

Bucket List

Thanks to the 2007 Hollywood hit “The Bucket List” it has become rather chic to contemplate your life’s dreams and goals and compile your own personal “bucket list”. Cyberspace is loaded with aides for doing so; blogs to help you maintain and share your list and books you can purchase to teach you how to compile your list. No doubt there is probably a formula for psychologically evaluating yourself based on the items you choose to include on your list… I guess current thinking is that this sort of practice is important and will allow us all to become more self-actualized and enlightened.

Maybe you have a Bucket List of your own…Perhaps it’s not all officially typed up or in writing but at least mentally stashed away in a corner of your mind where you can easily retrieve it and track your progress...things you’ve always wanted to do, places you’ve always wanted to see…

I’m not really sure what prompted me to start contemplating this concept in relation to being a cancer survivor, but I did…

My thoughts led me to question, “at the end of my life will the activities I was able to cross off my Bucket List bring me true satisfaction? Ultimately, will those things really matter to me? Will it be easier to leave this planet because I swam with the dolphins or ran a marathon? Will I breathe my last breath more confidently and with less fear because I sailed around the world. For me, the answer was a confident “no”.

But that’s me…I’m a cancer survivor and we cancer survivors don’t always see things the way the rest of the world does. Don’t get me wrong, I cherish new experiences as much, if not more than the next guy. I love to travel and try new things. I love to meet new people and consider myself a life-long learner. Yes, experiences are important to me and add to my happiness.

I guess I don’t have a problem with the idea of prioritizing the things you want to do in your lifetime: call it a Bucket List, your life’s goals etc.   What I do have a problem with is the assumption that these important and highly valued experiences will ultimately make some sort of difference, give my life more meaning, or bring me to the point of ultimate contentment.

My life experience has taught me, in a very real way, that

     It isn’t about what you do; it’s about who you are.

And so I reject the idea that I need to do certain things in order to live my best life.

I cherish my life simply for what it is…LIFE !!!… every breath is a gift, just being alive and able to experience a new day, as boring or exciting as it might end up being is fulfilling. I don’t need thrills, what I need is the ordinary. I want to go to bed at night smiling to myself thanking God for the people I do life with everyday; sharing life’s simple pleasures like a chat over a cup of coffee or a phone call with an old friend. At the end of the day what will make my life meaningful and allow me to leave this Earth in peace is knowing that in my own imperfect, flawed way I made a difference in other’s lives by showing love, compassion and kindness in the midst of the small everyday unimportant activities that make up my world.   

Thirteen years ago I almost lost my life. Thankfully, in God’s perfect plan I was granted a second chance. A second chance not to do more things, but to just “be”. I don’t need a Bucket List. I just want to, as Kenny Chesney sings, “thank my lucky stars that I’m alive and well!”

So damn easy to say that life’s so hard
Everybody’s got their share of battle scars
As for me I’d like to thank my lucky stars that
I’m alive, and well

It’d be easy to add up all the pain
And all the dreams you sat and watched go up in flames
Dwell on the wreckage as it smolders in the rain
But not me, I’m alive

And today you know that’s good enough for me
Breathin' in and out's a blessin' can’t you see
Today's the first day of the rest of my life
And I’m alive, and well

The Lies We Believe

I am so thankful for the fellow cancer survivors I have met since sharing my cancer journey on various websites and now this blog.  As cancer survivors we need each other. I take very seriously the unique situation I find myself in as a long term Multiple Myeloma Survivor. I have a voice that can give something… something that is priceless, really… and that is HOPE. 

When it comes right down to it, from the moment of our diagnosis the one thing we most desperately need  is HOPE. With hope we can conquer any treatment our doctor throws our way. With hope we can smile amidst the pain. With hope we can laugh despite the fear. 

 Sadly though, we seem to have a natural bend towards sabotaging our hope. What do I mean by this?
 For me, daily negative thoughts tried to rob me of my hope. Voices in my mind argued that there was NO HOPE. The internet shouted at me that Multiple Myeloma is incurable. Who did I think I was? Was I so special I could beat this evil demon? 

And so it went… new day, different words, but always the same message “Stop kidding yourself, you can’t beat this beast”. 

 As I’ve mentioned before I was blessed to have a care giver who constantly affirmed that I COULD beat this disease and that I WOULD beat this disease. His encouragement allowed me to find some balance, but the negative thoughts were still a challenge. 

I have had other survivors tell me that though their treatments are behind them and their remission is strong, their quality of life is daily hindered by negative thoughts about the longevity of their remission. I can so relate to this mental anguish. This is a serious problem for survivors. But what can we do about it? 

A few years ago I participated in a women’s study at my church on this very topic. Each week we read and discussed chapters from the book “The Lies We Believe”.  At that time in my life I was compelled to join the class because of some relational problems I was having with someone in my life. I needed to learn some mental exercises that would discipline me to throw out the junk-the negative thoughts imposed on me by other’s harsh words and see myself for who I truly was. The experience was nothing short of cathartic and the mental discipline I gained from the study was life changing. After I had worked through my current issues I found myself reflecting on my cancer experience and all the negative mental junk I had to deal with at that time. Along with the physical pain it was all so overwhelming. How I wish I’d  read this book back then..

Here’s what I learned that will hopefully help you, my fellow survivors.

• People DO survive cancer, even “incurable” cancers: It is imperative that cancer patients fight and fight hard. Remember my story when you are tempted by negative thoughts… 13 years and counting…cancer free! Don’t give up the fight…

• For Christians, our ultimate HOPE is in an ALL POWERFUL God who loved us enough to sacrifice His own son so we can have a perfect relationship with Him.  

And if God cares so wonderfully for wildflowers that are here today and thrown into the fire tomorrow, he will certainly care for you. Why do you have so little faith? Mt 6:30

• We are not in this fight alone. Our God will fight for us! Nehemiah 4:20

• I was not stricken with cancer because I was a bad person. Troubles, pain and sickness are a fact of life and will come to everyone at some time in their life.

God causes his sun to rise on the evil and the good, and sends rain on the righteous and the unrighteous. Mt 5:45

• God doesn’t promise he will spare us from all pain but He does promise that in it He will make a way out. God wants me to find joy despite my circumstances.

Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy. James 1:2  

So….

Couple your suffering with Joy... joy based in the fact that God is still God; He still loves you (despite the cancer), He is more powerful than any circumstance that you come up against in life, and regardless of what happens to you down here, you are still going to heaven someday where all misery will end. – from “The Lies We Believe” pg. 85

Overcoming negative thoughts isn’t easy. It takes discipline. Discipline that can be hard to muster amidst all the other challenges cancer treatments bring. Our minds are amazing systems. Negative thoughts affect our brains negatively. When we repeat the same negative thought patterns in our minds over and over again damage is done. Mental tracts are created. When we retrain our minds the toxic memories will diminish and we will find the power to avoid those mental dark places.

Whether you are a cancer survivor or not if you struggle with negative thoughts of any kind I encourage you to take the time to read these books.  

Reading list:

The Lies we Believe-Dr Chris Thurman

Who Switched Off My Brain?: Controlling toxic thoughts and emotions- Caroline Leaf

Battlefield of the Mind-Joyce Myers