Just cleaned out Abby’s dresser and found diaper cream tucked in the back of a drawer. It makes more sense when you think that I was diagnosed just a few months after she was potty trained. Five years later…
My favorite moment today after trying on a new pair of jeans that arrived in the mail.
Abby: “Mom, are those jeans supposed to be torn? Cause they don’t really look like mom jeans. They look like um, young jeans. But I like them!”
Five years ago today I was diagnosed with melanoma. The phone rang while I was sitting at the kitchen table creating picture labels for dresser drawers with Joey and Abby. I had NO idea what was coming or what the diagnosis meant. Joey was 5 and Abby was 3. I had Danny come home that day at lunch to cry on his shoulder in fear. I knew melanoma was “the bad skin cancer” but not much else.
It’s been five years, seven surgeries, six biopsies, ten treatment approaches, nine chemotherapy and immunotherapy drugs, tumors come and gone through treatment and surgery and two years of dealing with brain tumors and their aftermath. We’ve come a long way, baby! And I know a lot more about melanoma and its treatment now.
We are in an odd place though. It feels a bit like we’ve just finished frantically getting a fire under control. The fire didn’t destroy everything, but it sure changed the landscape around us. Now we look around and ponder how to we go about rebuilding and reclaiming our lives as a family? What is next?
The other strange part of this reflection is that the fire isn’t fully out yet. Although I am doing really well, I do still have numerous tumors. I remain in active treatment. I deal with side effects of treatment. I easily fatigue, my joints ache, my life is interrupted once a month for the next dose (an all-day affair of labs, doctors and infusion.) Although we are eager to rebuild this fire ravaged landscape of our lives, we can’t build on the sections which are still smouldering. And those sections may remain permanently. There will most likely always be embers or blazes which require monitoring and attention.
The rebuilding process is overwhelming. Everything in our lives has been touched by this fire of cancer. Our faith looks very different than it did when I was diagnosed. It has been reshaped in drastic ways which affect every facet in which we have built our family. Overwhelmingly God’s love through this process has brought us to our knees. It’s also revealed areas of faith that weren’t built as solidly as we thought. My faith is more grounded, my perspective more loving, and my desire to serve others is greater than I even imagined it could have been five years ago.
Our family has been singed fighting this fire. We have begun the process of counseling and dealing with the emotional effects of this journey. We are stronger today. My children are wise and compassionate beyond their years. Daniel and I have a deep understanding of in sickness and in health vows after 13 years of marriage. Our parents and siblings have been in the trenches with us in ways we can never repay.
Relationships are touched. Being the needy one in most of my relationships was bound to take a toll. Fatigue plus an introverted personality make it difficult to be the friend I aspire to. I am so thankful for old friends who have stood alongside us, new friends who have walked with me, and the incredible melanoma community locally and nationally I have been allowed to participate in.
And we also begin to address things which have been put aside while our focus was putting out flames. I had my first dentist appointment in five years last week. Who needed to go to the dentist when you are going to die? Except now I am going to survive this and I’d like to bring my teeth along for the ride. We are living in our “starter home” which is beautiful and sufficient, but we dream of a little more elbow room for growing children and friends.
It’s an interesting stage. There is a lot of talk in the cancer world about survivorship and dealing with life after cancer. It’s a wonderful problem to have. But the flames of cancer have left us dirty and reshaped. Rebuilding is going to be a new kind of work. It’s daunting. We don’t have a blueprint yet. We are interrupted by the work of the embers still smouldering. We are weary. We are hopeful. We have survived. Five years.
Daniel found this link today and I thought it was worth sharing. We had crazy amounts of water in our normally almost dry river today. The banks were overflowing when we walked to see it this afternoon!
I had the opportunity to speak with the woman who wrote this piece today. I feel so blessed to have cutting edge care in my backyard! At the hospital where I was delivered, no less!
Yesterday, I was speaking with a counselor who is working with our family. As I explained some of our back story to her, I told her that when I was diagnosed with melanoma in 2009, my kids were 3 and 5 years old. I was 29. When I progressed to stage 4 a year later, my goal and focus was being here to get Abby through kindergarten. When I reached that goal my focus became to see the kids finish elementary school. After some big bumps in the road (brain tumors are BIG bumps) I began the clinical trial I am currently in. One day about a year ago after repeated good scans, I remember looking at Daniel and saying, “I’m going to see them graduate high school!” Today my hope is to see them married and rock my grandbabies.
Today, the FDA approved the drug that is saving my life. I am so excited and thankful for this medication and that is will now be available for my melanoma friends. The trade name announced today is Keytruda. The medication name is Pembrolizumab.
There are more anti-pd1 drugs being developed for multiple cancers which are literally changing cancer treatment and outcomes. What an amazing day to sit and take a deep breath and know that my friends now have access to this drug. History was made today.
It’s bittersweet as I remember MANY friends whom I have loved and lost along this road. From my diagnosis in 2009 to today, 5 new drugs have been approved for stage 4 melanoma. In 2009, the offerings and success rates were dismal. But, I also feel such hope for the future. For my friends currently struggling, for my friends who will be diagnosed in the future, and especially for my children. Today brings hope and joy!
Thank you God for the doctors, researchers, trial patients, nurses and financial donors who allowed this to happen. We have not yet won the war against cancer, but today was a big step as a new arsenal was made available to those on the frontlines.
For more information about Keytruda, see Merck’s Press Release.
This post was written on Aug 14th during my infusion. I didn’t get it polished to post at the time. That night was Parent Information Night at school. Joey ended up in the PICU the next day! Add recovery from that, some time the site was down and life in general and Anti-pd1 dose 20 is only 3 days away! I am on every 12 week scans now, which is a welcome break, so this post includes the results of those scans.
Today was my appointment for scan results and my next dose of anti-pd1. It was a long morning of waiting. I was quite nervous about my scans this go round. Lots of my friends are encountering major potholes and detours on their melanoma journeys and it caused me some fear that my lately smooth road might get bumpy. I am thankful for my success on this trial but heartbroken for those who I love who are struggling. Cancer is a horrid disease. Thankfully my oncologist told me I was his only patient who received good news morning. That certainly put the wait time into perspective.
So, things are good in Marthaville! My tumors continue shrinking and remain stable. So I continue pressing on! We had a fantastic storm while I was at the cancer center including some loud thunder claps and a good power brown out.
Today was my six month follow up with the neurologist about my seizure meds. I had two things I wanted to discuss with her today. One is my daymares which are vivid and I often can’t wake from despite repeated false awakenings in my dreams. This may be caused by the Keppra I am on due to focal seizures. Although it would be unusual for it to cause new symptoms after a year. So, after some discussion about my variety of medications which may be the root of these symptoms, we came up with two plans.
Plan A is for me to reduce my Ambien dose to the new FDA recommendations for woman (5mg rather than my prescribed 10mg.) And go back on brand name Keppra just to be safe. Generic meds have the same primary ingredient as the name brand, but filler ingredients don’t have to be exactly the same. So with medications which affect brain chemistry, my neurologist is more comfortable sticking with brand name when insurance cooperates!
Plan B is to reduce my Keppra (seizure med) dose from 1000mg XR to 750mg XR daily if plan A doesn’t work.
My other question for her was about my frustrations with expressing myself. I tend to be a grammar stickler, but despite repeated rereadings, I am overlooking simple misspellings and misused words in my writing. It is embarrassing and frustrating! I have noticed that in the past year my verbal aphasia has improved significantly, so we are hopeful that my brain will continue rewiring around my necrotic (dead) tumor sites. Speech therapy could help or playing some of the brain games online. We do know that my seizures affected my communication and reading so it makes sense that these areas are the slowest to recover. In the meantime, I shall consider blogging therapy and continue begging forgiveness for my grammar mistakes. It’s all a part of the journey. Isn’t cancer grand?
I have one super happy family! Check out Daniel’s story of the adoption!
I felt so great after my infusion of anti-pd1 therapy on Thursday! Came home and enjoyed the family and got some chores done. On Friday I stayed busy and had a girls night out with some of my besties. This morning, three days post infusion, I felt I’d been hit with a ton of bricks. I saw the signs coming last night, drinking tons of water but it wasn’t absorbing. Then at one point while out with friends, I felt fatigue and a bit of light headedness wash over me. I also didn’t finish my gelato from Frost- a sure sign of impending doom! Once in bed, I realized my leg that swells with lymphedema was very swollen.
So, I shouldn’t have been surprised when I woke up swollen, sore and exhausted! I slept most of the morning and more this afternoon. I’m so glad Daniel is home to carry the load. He takes such good care of us. The family is out on a walk and I am still resting. This is the new normal and I wonder if it will ever really feel normal. I am so thankful that most days now are good days so the bad ones stand out!