A Son’s tribute

A blessing of this blog are the people who correspond with me.  Some are patients, some are survivors, some are caregivers or friends; some are Christians and some are not, but we all have one thing in common, cancer and it’s changing  impact on our lives.

Recently I was contacted by Sean, a son who watched his mom travel the cancer road and lost her earthly battle but is forever in Eternity with her Savior and Lord, Christ Jesus.  In reading his story, his mom’s cancer and her faith brought an understanding and desire for his need and relationship with Christ.

In his love for his mother and inspired by her pilgrimage, he wrote a song for her and all others who share the common bond of cancer.  Music is comforting and therapeutic, calming the unpredictable storm; the ups and downs, the unknowns and uncertainities, the victories and set backs.  I know because music was one of my anchors during my journey.

Sean sent me a link to his song, “Deliver Me”, and his authenticity and humility are felt in the words.  I asked him to share with us his mom’s journey and how she inspired him.  Please enjoy and find the peace you may be looking for in this song of comfort.

My mother Aurora was diagnosed with stage 4 brain cancer (glioblastoma multiforme) in the spring of 2004. She was an extremely strong and driven woman – wife and mother of two (my older sister and I), executive in the workplace, social butterfly, and active in the community. The thing that stood out to me most about her though, especially in the last two years of her life, was the amount of love and devotion she had for God.

That reliance on God carried her through the remaining 20 months of her life on earth. Suffering through 2 different major brain surgeries, chemotherapy, radiotherapy, strict dieting, and a whole slew of other treatment processes that are too numerous to count; she remained steadfast in her faith. While her body deteriorated, her relationship with God increased. Though we prayed for her miraculous healing, we knew ultimately that the decision was in God’s hands, and that His plans are greater than ours.

God sustained her for 20 months, which was literally 14-16 months longer than the original time frame we were given by the doctors. She passed away on November 9, 2005, just 2 months after she was able to walk me down the aisle as I married my wife Justine. She had asked God that, if anything, that would be the one last major event that she wanted to be able to attend in person, which He granted her before she went home to be with Him.

I can go on forever about my mom, and the impact she had on people’s lives, including my own. One of the lasting memories I have of her in her final days, was her smile as she repeated the words, “Always remember… God loves you.” It was the final line I was able to share at her funeral service in honor of her, and in that God began a work in me that is the biggest surprise of all.

I had just personally come to accept Jesus as Lord and Savior of my life in 2003, the year before my Mom’s diagnosis. I firmly believe that His timing is perfect, as He had strengthened me and my faith over that year in between, which enabled me to support my mother and family through this difficult time and help us to focus on the eternal perspective. While the years between 2005 and 2012 were somewhat quiet for me as God developed and built me up, last year marked a sudden change as He thrust me fully into music ministry, that I never for the life of me, thought I’d ever be a part of.

And thus I’m sharing an original song I wrote called “Deliver Me”. I wrote the chorus during the final months of my Mom’s life, before I was even a “song writer” (I guess I’m one now!). I kept those words in my heart, and He recently completed that song through me earlier this year as I was praying for my friend Kristi, who is currently battling stage 4 lung cancer. It’s based on Psalm 18:2, which reminds us that we can depend on God through any circumstance, and that regardless of the earthly outcome, we have ultimate and eternal victory over every enemy through Jesus!

Kristi reminds me of my Mom, in the fact that she has unwavering faith in God’s goodness and mercy despite her circumstances. And I’m sure there are so many other women and men out there fighting cancer, who can share a similar testimony. I thank God for these brothers and sisters that, through their journeys, encourage and inspire the rest of us to continue to do better, to love more, and to honor God no matter what, because He is worthy and has a plan and purpose for each of us. My prayer is that this song can serve as a reminder of the hope, joy, and strength we have in God, in light of the trials we face.

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Helpful Hints for parents of childhood cancer

emily 1

“The cancer world is not one we would have chosen for ourselves, but now that we’re here, we are very thankful that our eyes have been opened, not only to the needs of other families like ours, but also to the amazing hearts of people who just want to help.”

 

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The above quote is from Chrissy Love and the Love family members are heroes in my book.  I “met” Emily Anne Love while developing my blog and in looking for other Christian cancer blogs, I came across her’s.  I have “known” Emily and her family almost from her diagnose and follow her progress faithfully.

I asked Emily’s mom, Chrissy, if she would write a list of “Helpful Hints” that she has learned through trial and error.  She is kind enough to pass on this very thorough list for parents who are just beginning to travel this cancer journey and for those who may be in the midst of their cancer journey.

Chrissy’s most recent post on Emily’s blog, emilyannelove, introduces a wonderful photography service to families.   The Gold Hope Project is a volunteer service of professional photographers giving their time to capture precious moments of families experiencing childhood cancer.  The above photos were taken by Mindy Newton, of http://www.mindynewtonphotography.com, a photographer in Roseville, California.  As you can see, her work is excellent.

Thank you, Chrissy, for your time and may this list be a resource for many other families who are now walking in your footsteps.

Helpful Hints for Parents and Caregivers of children with cancer

  • Put your marriage first. Don’t let cancer consume you. Hold hands with your spouse and walk this road alongside each other. Provide stability for your children, because they will be floundering.
  • When one child is diagnosed with cancer, the whole family gets cancer. Your other children will need you. There will be a period of time when you just won’t be available at home, and that’s okay; but as much as you can, spend time with your other children. They are just as scared as you are.
  • Instead of Tagederm, put Press ‘n Seal over the EMLA cream when getting ready for a Port access. It’s not as sticky and will come off the skin easier.
  • Wrap silk tape around the Broviac catheters to safety pin them to the shirt, so no curious hands can yank on them.
  • Wrap saran wrap around Broviac tubes for bath time.
  • If your child is too young to swallow pills, crush the pill into a powder, and put it into a spoon with a drop of water. Have a small treat (like an m ‘n m) and a sip of water ready if it’s a yucky med.
  • After a spinal tap, ask the doctor for those extra pink swabs to take home and use as paintbrushes in the bathtub.
  • Get a huge, 3-ring binder and put every piece of paper you receive into it. Medication Fact Sheets, Lab Results, Admission papers, etc. You will want them at some point.
  • When the hair starts falling out, don’t be afraid to just cut it.
  • Always have a To-Go bag ready with: a change of clothes for you and your child, socks/slippers, a book, cell phone charger, water, snacks, toys, toiletries, a favorite movie, anything to make an unplanned ER or hospital trip easier.
  • Utilize the resources available, and don’t feel guilty about it!
  • Don’t feel bad for accepting help –one day you will be able to reciprocate, and people really do want to help, it makes them feel good.
  • Make friends with all the staff involved in your child’s care, including janitors, receptionists, pharmacists, etc.
  • Add the pharmacy, hospital, clinic, and other important numbers to your speed dial.
  • Keep a list of emergency babysitters in your purse.
  • Never, ever promise your other children you will for sure be back in a few hours, especially if you’ve had to call the on-call oncologist for a fever. The chance you are being admitted is far greater than the chance you will go home –even in Maintenance. You will have to break some promises to your children, and it will suck. But if you can prepare them in advance for a possible hospital admission, you will all be better off.
  • Some of your other children may exhibit yucky behaviors. Have patience and talk with them. They are probably scared and missing you and their sibling.
  • If at all possible, delegate responsibilities to willing helpers: put someone in charge of a Meal Train, ask someone to coordinate babysitting, and assign someone else the task of keeping everyone updated. You will not have the time or energy to handle these necessary tasks.
  • Research, ask questions, talk with other families … but ultimately, trust God and your doctors.
  • Write down questions as they pop into your head; you will forget them otherwise.
  • Smile and be open to other families as much as possible; it really helps to walk the road together.
  • Hope, trust, hold onto faith.
  • Smile, laugh, and find joy in every moment, no matter how small or fleeting
  • Buckle down and hold tight when Steroid Week rolls around; be prepared with favorite snacks, a lot of patience, and some easy ways to break the tension.
  • Purpose to spend one-on-one time with your other children and/or your spouse.
  • Don’t be afraid to leave the hospital for an hour, or two, or even for a night or day. Your child is in good hands (especially if you can trade-off with a family member), and you need the time at home.
  • You MUST take care of yourself. Life will be stressful and scary and tense and chaotic and rushed. But if you don’t pay attention to your body, it will fail you and you will be no good to your sick child or the rest of your family. Sleep, eat well, exercise, take supplements if you need them, go to the dentist and doctor like you normally would; find time to grieve, cry, wail out to God, meditate on the Word of God, pray with friends, and then to smile, laugh, and move on –until you need to cry again.
  • As much as possible, don’t coddle or cater to your sick child. Comfort them in their pain, hold and snuggle them as much as you can, but don’t let them get away with tantrums, fits, or selfishness. (Hopefully) There will be a life after cancer, and you’re still raising your child to be a kind, loving, unselfish person. Plus, constant catering to one child usually produces resentment in the siblings. Seek to maintain a balance between caring for legitimate needs and maintaining a normal household.
  • When your child’s ANC is low, order your groceries online and either have them delivered or pick them up at the grocery store kiosk.
  • Keeps masks and hand sanitizer available for when the ANC is low and guests come by. Obviously, don’t be afraid to say no to guests if the ANC is too low.
  • Your child will receive a lot of gifts. A Lot. If at all possible, try to spread the wealth amongst your other children too. Instead of letting your cancer-child bring home her 20th stuffed animal, help her pick one out for a sibling.
  • If your child has a Broviac, teach a few trusted people how to properly care for it (change the dressing, flush the tubes) so you can leave your child for a few hours for a date night or just some time off.
  • Invest in a good, accurate thermometer.
  • Keep a First Aid kit in your bag with hand sanitizer, masks, gloves, a thermometer, and a set of clamps if your child has a Broviac.
  • If your child suffers from constipation when receiving Vincristine, begin giving Colace and/or Miralax 2-3 days before they receive the chemo. It may not completely prevent constipation, but it does help keep the stools softer.
  • If Vincristine causes neuropathy, gentle massages and warm baths help with the pain.
  • If your child is scheduled to receive High-Dose Methotrexate, and wears a diaper, buy Calmoseptine Ointment from Walgreens or amazon.com. It comes in a white and green tube and works wonders to keep the diaper area protected from sores.
  • If your child wears a diaper, when urine needs to be collected, ask if you can stick sterile cotton balls in the diaper instead of letting the nurses attach a bag to the vaginal area. If cotton balls are not an option, ask the nurses to not use the sticky swabs to “glue” the bag onto the skin. It is an absolute bear to get off, and it really hurts a super sensitive area. The bag is sticky enough on its own.
  • Never let a catheter be inserted to collect urine. The risk for infection is too high. Don’t be afraid to tell a nurse No.
  • When you’re admitted to the ER for a fever, remind the nurses to take a temp reading and collect urine before administering the first antibiotic. The ER staff are wonderful, but they probably don’t specialize in cancer patients and may forget the procedures.
  • You are your child’s advocate. Don’t be afraid to speak up.
  • If you’re ever uncomfortable with a nurse in the ER, ask for another one. You can always request to have a Pediatric Nurse come downstairs to access the Port or do anything else needed.
  • When your child is going through the heavy chemotherapy, give nausea medication around the clock.
  • Make copies of the important sheets provided to you by the Oncologist; ie., when to call the doctor, medication list, important phone numbers, etc., and give them to whomever watches your child. 

Your fear and pain is my disguise

Over the summer I have posted various chapters from my blog book, PTSD and Cancer:  Lost, alone and afraid.  Many people have asked me what my response has been from those who have either found my blog via Face Book or through search engine terms, ie. “googling.”  This isn’t a super stat blog but it certainly is serving it’s intended purpose.

I am receiving notes and emails from individuals thanking me for posting an honest, open and raw account of depression and cancer – Christianity, depression and cancer.  Just as I had hoped, survivors are finding through my story that what they are experiencing post-treatment is not “unnormal” and that they aren’t “going crazy.”  In reading their stories, my heart hurts for them as I relive what they share with me.  For some survivors, I wish I could hug them and hold them and let them cry and later talk, talk about what we feel we shouldn’t be talking about because “everybody tells me I should be thankful and grateful that I am cancer free.”

My continued prayer is that in a survivor’s quest to learn more about post-treatment depression they will find my blog and read my story and find the hope and peace they so desperately are looking for.  Yes, our strength comes from Christ our Savior, and in my weakness called depression He was always there whether it be through a secular counselor, a book, a web site or a cancer support group.  I really was never alone and I am here to tell you – you are really never alone.

The following chapter is what I might consider one of my most provocative chapters.  I hear often, very often, how once a patient is done with treatment their life fills with busyness, busyness to the point of distraction.  Is it better to distract yourself after treatment pushing your cancer experience behind you or should you stop yourself and reflect on what you just went through and allow the emotions to surface that you so successfully buried?

January 5, 2010mask

I didn’t think I would make an entry so soon.

As I was writing this morning, my writing revealed a truth.  I was disguising my pain and fear by “helping” other cancer patients and survivors.  I was “helping” them by listening to them and talking with them about their suffering.  I made myself available to them because, subconsciously, I desperately wanted them to answer my questions about my suffering.

Since exposing my true weakness and becoming more transparent with people, some have questioned my decision to completely drop out of “things.”  I know volunteer work places attention on others and not self.  After this morning’s journaling, I know I am in the right place by not filling my time with “things” but taking the time to explore me.

January 5, 2010

I am accepting my cancer, it did happen and it wasn’t a cold virus and over in 10 days. It was an unbelievably surreal, dreamy time in my life. I might mention that again and again as I accept this illness.

So far in a year and a half, I haven’t quite found myself. I came home from SLC a much spiritually deeper person. My one true anchor through all my treatment was my faith and hope in Jesus Christ. Once home and back into a routine, that intimacy and concentrated time was interrupted as the early morning turns into a day of activities.

The landscaping of our yard was a great distraction from having had cancer just months before. To be outside with growing strength and renewing energy, the sunshine and tackling one acre of “dirt” was a healthy challenge for me. Feeling strong and working on this project was like spitting in cancer’s face.

After my SCT, I expected to spend the first year of recovery fatigued and weak. I was shocked at how quickly I recovered and how my strength and stamina seemed to grow stronger daily. I was doing pretty well and I was feeling pretty well.

Literally, when we just finished the landscaping and we were enjoying the beauty of our labor, the flowers and shrubs, and the bounty of our labor, the cherries, I fell off the ladder and broke my leg. I had a lateral break in my tibia, my tibia plateau decompressed and I tore my ACL off of the bone. Surgery rebuilt all that was destroyed. My leg was reconstructed with plates and pins.

In all my years, I never felt such pain. It was overwhelming. And not only was it overwhelming, it was exhausting! The fatigue hit me like a Mac truck. The great majority of my healing was from the end of July to the end of October. The ache or discomfort and my limp lessened all through November and in late December, I noticed what remained was a slight limp.

This accident and recovery distracted me from my cancer. My thought and energy was on my leg. Toward the end of my healing, I began to spend more and more time thinking about my cancer.

I was in complete remission and my leg was better so I began to focus my attention on other people who had cancer – I had this driving passion to help them.  I met with cancer patient/survivors personally.  Most often they wanted to hear about my experience. I also attended our cancer support group and actively contributed to our discussions.

If I couldn’t physically be with people, I participated in on line discussion forums and I volunteered to be a telephone mentor through the Bone Marrow Unit at Huntsman. I was distracting myself again, all my thought and energy was expended on other people. It was an odd time and one I am now exploring.

I think I was superimposing my fear and pain on to others by disguising it as “helping” them get through their fear and pain.  In an odd way, I wanted them to answer my questions about me.  I wanted to ask them three questions. One, if the cancer recurred how would you determine what action to take? Another type of chemotherapy that makes you feel sick and crappy or another form of treatment? How would you choose quality of life verses quantity of life? Dying more quickly and naturally or a prolonged death being kept alive by drugs and transfusions? Two, how/when do you know enough is enough? (kind of the same as one) And three, discuss the reality of death and dying. I thought I was being helpful to them but really this was all about me, me and my curiosity and my grasping for answers to these questions.

I believe before my anxiety and stress manifested, I was becoming more and more obsessed with these issues and perhaps even a little manipulative with others. I wanted to make my problem their problem, I wanted them to answer my questions. I wanted answers and really nobody could give me answers. As my frustration grew, my doubt grew; I began to feel guilty and I felt ashamed. I realized I was not as strong as I thought I was and I had not overcome the psychological aftermath but was feeling the vortex pull me down again. I wanted answers but nobody could give me answers.

Why, after a year and a half was I still suffering? Shouldn’t I have overcome all of this by now? Does anybody else struggle like me? Do they think of these things? Doesn’t anybody talk honestly and openly about these issues or do we always have the “hope” that possibly some new drug will come along to save us? Stupid questions, selfish questions especially when there are women I know dying from cancer. Stupid, selfish questions – I should be grateful I am alive and in complete remission.

And I broke. I am not strong, but I am broken and afraid. I hurt and there is this deep, deep pain hiding in me.