Friday, March 22, 2019

Rejoice!


“This is the day that the Lord has made. I will REJOICE and be glad in it.” Do you wake up each day and FIRST thing say, “Thank you God—I have THIS day!”? Despite your circumstances or your suffering, do you rejoice in the day you have? I DO!

March 1, 2019 was the anniversary of my first cancer diagnosis. It has been SIX years! I am still battling—2018 brought a lot of pain, misdiagnosis, blood draws, scans, and ultimately another cancer tumor found in my pelvic region. 2019 began with daily radiation and chemotherapy pills for six weeks and then a procedure to put a stent in my ureter so my kidney could filtrate since the tumor was pushing on my kidney. My digestion and elimination system have been whacked out for years, but this radiation and chemo session ramped it up and it has been quite interesting (I will spare you the details). 

I want you all to know that I am not being fake here. I have always said that I would be real and raw in my blog. But this is true: God has given me a supernatural strength through all this. I tolerated the radiation and chemo very well and was able to keep to my schedule of spinning, hiking, and walking the dogs, as well as working, being a mom of a senior who has tons going on, and maintaining my precious time with dear friends. God gave me that strength! It is only from Him. I know with my whole heart and being that I did not get through this on my own strength.

After the radiation and chemo treatments, I had an ultrasound on my kidney and the doctor was thrilled that the stent had worked and my kidney was not swollen or stressed. He was prepared to move onto the surgery to remove the tumor. Then I had a scan of my whole body and had appointments with my oncologist and the colon surgeon. Everything was looking good to have a surgery in early April. My doctor had approved for me to take a getaway vacation before the surgery. Greg and I had flights booked to stay at our place in Puerto Vallarta. And then….

The scan did not show the results any of us anticipated. It showed three small spots in my lungs. Despite the chemo and radiation, the cancer had spread. The doctor said that they are miniscule….two spots on my right lung and one on my left. Despite being small, they are spots and they are suspicious, so the doctors met and decided that they would postpone surgery and I will continue with infusion chemotherapy for the next two months and then scan again. 

Two days after this news Greg and I headed to Puerto Vallarta and spent time resting, relaxing, reading, and not checking emails or phone calls related to my cancer. It was precious, beautiful time. The beach, the mountains, the sunsets, the food, the time alone with Greg—I was able to bask in God’s glorious creation and be reminded how extremely blessed I am.

I know that millions of people in the world battle disease and don’t have the opportunities I have. I want to acknowledge that clearly. I have healthcare and insurance. I have the money to pay for it. I have the best team of doctors all working together to provide treatment. I am able to go away on a vacation. I have a warm and comfortable home. I have a flexible schedule and a job at my church that brings me joy and purpose. I get to live out my passions. I have a community of friends who love and support me with words, actions, and prayers. My husband and my boys are my joy. They are strong in their faith and they have worked through this battle with me every step of the way. I never want to take for granted the comfortable life I have lived. I am humbled by the people I meet who are battling cancer and disease and who do not have the options and choices that I have. I want to continually acknowledge that and encourage each of you who are reading this today to truly look at what you have—your options, your choices, your opportunities…..and choose to be grateful. And then, I want myself and each of you to decide how you are going to make movement to use those privileges to help others and give the glory to God.

When we built our home in the hills of Poway in 2003, our vision and purpose was to have a home that would be inclusive and would be used for people and ministry. We were blessed with a plot of land that is nestled in the hills. A stream flows in our backyard. The wildflowers are in super bloom in the exuberant green that surrounds our home. It is a place of community and a place of refuge. 

Two weeks before I heard the news that there was more cancer, Noah’s Young Life Director from Colorado called us and said that their lodging fell through for their spring break trip to Southern California. Noah had suggested that if I was feeling strong and healthy, that maybe they could all camp in our backyard for the trip. Greg and I said that they could absolutely come, and use the whole house and backyard. A home. A home that is bumped and bruised from thousands of people who have trooped and stomped through for years. Young Life club. Bible Studies. Discipleship groups. Marriage counseling. Pool parties. Birthdays. Barbecues. Baptisms. Sunset happy hours. Community groups. Leadership meetings. Food. Wine. Fellowship. 

Last Saturday, when we arrived home from our trip to Puerto Vallarta, 17 young men from Colorado State Fort Collins occupied every square inch of space in our upstairs area and in our backyard and cabana. Air mattresses, sleeping bags, pillows and blankets….coffee makers and a coffee station up on the cabana….wet suits and towels hanging on every fence rail….food lined up across our laundry room and in the outside refrigerator. Young men who woke up each morning to two hours of individual quiet time with the Lord, and then two hours of sharing God’s Word and learning with each other. Men who packed lunches and headed out to the beaches of San Diego, (rain or shine)…..many of them who had never surfed before and many who have rarely seen or been to beaches. Young men who came home each evening and sat in the Jacuzzi and shared and grew in community. All these men are not only college students, but they are Young Life leaders in the middle schools and high schools of Fort Collins. They are pouring into young kids who are anxious and afraid and overwhelmed by the world. They love these kids exactly where they are. 

This. This. This is what life is. It is community. It is love. It is grace and faith. It is struggling through it together. Together. Together. This. This. This is what a home is for. Gathering. Meeting. Breaking bread together. Laughter. Games. Deep conversations. Opening the Word. Encouraging. Working through the hard times. These young men who my son has chosen to walk with through life—these young men give me hope. They love Jesus. They love each other. Then they pour out love as they serve others. 

Yes, I have cancer. My news is not good. But that is not what I am focusing on because God is showing me so much more. He continues to direct me to what is good and beautiful and important. He continues to give me strength and power that only comes from Christ in me. Once again, I am upended with news that wasn’t in MY plan. But I move on, in faith, and in His strength. I rejoice in the beauty of each new day. In pain, in darkness, in struggle, I rejoice. I look out now into my backyard. There are towels and wet suits blowing in the wind upon the fence rails. 17 young men are gathered on my cabana studying God’s word, drinking coffee, and sharing their lives with each other. Yes, I live with cancer, but God says to me…..”Look at what surrounds you…This. This is what you focus on.” Community. Love. Friendship. Joy. 

This is the day the Lord has made. I will be glad and rejoice in it.


Monday, January 14, 2019

Intention and Trust


It is a windy, rainy, and cold day here in San Diego and I am making the most of it by working from home in my pajamas with warm candlelight glowing in my office. Today’s post is mainly an update on my health. First, I want to say that it means the world to me to receive all your messages, comments, emails, texts, and phone calls. Thanks for checking in, giving me encouragement and strength, and for praying. It amazes me when I receive a message from someone who I had no idea was following my blog. I will never know everyone who reads it or is impacted by it, but that is not for me—because the whole purpose is to glorify and point to Jesus in all that I say and do. As always, I encourage you to send my information to anyone who needs support as they battle cancer—the survivor as well as the family. I love being able to help and answer questions about the cancer culture.

2019 began with my radiation schedule—five days per week for six weeks. I also take eight chemotherapy pills per day along with my treatment. My insurance denied the chemo pill (versus infusion) three times before my doctors got it approved.  I continue my treatment at the renowned Moore’s Cancer Center at UCSD and I am in wise and capable hands.  Radiation itself only takes about 20 minutes, but it is the drive there and back that makes it a two hour plus adventure each day. I make the most out of it by returning phone calls and listening to podcasts. Many have asked about driving me to my appointments, but as of this week I still have the strength to do it myself. If the fatigue and side effects hit, my friend Kathy will be in charge of the schedule. I am also grateful for all those who are sending meals on the meal train. This is so helpful, although with all these desserts, we are all getting fat and it’s only a week in. As much as I might complain about insurance, I am grateful that I have insurance, health care, and a hospital close by to get my treatments. I am well aware that many in our nation and the world do not have these opportunities. I always try to put everything in perspective and the best way to do that is to have a sincere attitude of gratitude. It puts me in my place!

Last night I was praying and thanking God for all He has given me and I couldn’t stop finding things I am grateful for. He has provided me with so much, starting with my amazing community of friends. As an introvert, I sometimes feel overloaded with people in my life. The inner critic in me tries to say that I am not going deep enough or giving back enough or being the loyal friend I want to be. Also as an introvert, I need lots of rest, balance, and down time, and sometimes with so many friends it is hard to keep up. Yet, I am incredibly grateful for all the friends in my life-- so please keep up with the encouragement even though I may not respond to a message. I really do have the most generous, loving, compassionate, funny, crazy set of friends out there! 

Since I am now in my fourth round of cancer, I have learned much about priorities. I have chosen two words for myself to put into thought and practice this year. The words are INTENTION  and TRUST. I want to be even more intentional about my time—spending it wisely and saying NO to things that aren’t life giving to me.  I want to be intentional about my friendships—spending quality moments as well as spur of the moment things like a quick walk or an impromptu coffee date. I want to be more intentional about my family—besides Jesus, they are my rock solid foundation. I love spending time with my boys and Greg, whether it is walking the dogs, eating sushi, cooking together, watching movies or sports, or playing games. Lastly, I want to be intentional about knowing Jesus more. That is where intention and trust converge. This is not a check off list. I had quiet time—check. I prayed—check. I read my Bible—check. I went to church—check. No, this is an absolute desire and craving to know Jesus more, not so I know about Him, but to truly know Him. 

In this six year journey, I have also learned that, shockingly, I am not in control. My desire to know God more clearly comes from understanding that I am not in control and learning to trust the ONE who truly is. It is always a work in progress, this journey with Jesus. We don’t wake up one day and say, “I got it” and then move on from Him. (Well maybe some people think that is how it works). It is a daily process, a daily surrender. As I face this next trial, that is what I want more of—surrender, trust, process, intention.

As you begin this new year 2019, I pray you will define your priorities, be intentional with your time and friends, and be grateful for all that you have. I pray also that you will desire to trust and to know Jesus more dearly and clearly in this thing we call life.  

Friday, December 21, 2018

Glimpses of Hope


I’ve been debating how I should start and title this post. I thought about “Category Four Shit Storm”; I thought about “The month from hell”; I thought about “Unrelenting.” But as I have processed through this difficult time, I realized that despite all the pain, sadness, anger, and frustration…there were many precious glimpses of hope and joy.

In my previous post when I found out that the cancer was back again, I wrote about the waiting, and also of the beauty I found in the brokenness. As my family dealt with bad news after bad news, I really did become numb and I couldn’t even process. But now I have had time and things have calmed down a bit (please Lord let it be calm for a while longer)…I will chronicle these unrelenting experiences in a condensed chronology.

As I wrote in my last post, on November 6 I found out that the mass in my pelvic region is indeed a malignant cancer tumor, and then two days later we found out that our sweet dog Moses also has cancer throughout his body that is inoperable.

The next two weeks were filled with numerous appointments with surgeons to prepare my treatment plan, as well as having my boy home from college and sharing a beautiful Thanksgiving with friends and family. Amidst all this, I was trying to reach my step dad Ric who lives alone in the Bay Area where I grew up. He has been in poor health, but had told me he was going to try to drive here for Thanksgiving. After calling him numerous times, and having neighbors check with no success, we had our friend call police to do a welfare check. Ric was found in dire condition and taken to hospital with a fractured hip and many other issues.  From this point on, each day was filled with numerous calls from the hospital--case workers, nurses, and doctors. I couldn’t get on a plane to see him because I had many cancer related appointments scheduled. It was difficult and emotionally draining to be far away and not by his side.  

(Necessary side note for clarification—In 1995 my parents told us they were divorcing after 33 years of marriage. A few years later my mom remarried a man (Denny). A few years after that my dad also remarried… a man (Ric). My dad passed away in 2015. My sister and I have been calling Ric “dad” for awhile, though technically he is our step dad. My sister and I are Ric’s remaining family.)

My doctors had scheduled another detailed MRI and a colonoscopy so I had two back to back appointments the Monday after Thanksgiving. This began my “terrible, horrible, no good, very bad day.” While driving to my morning MRI appointment, I was waiting at a red light, minding my own driving business, and a guy plows into me on my drivers side, smashing my door in and my front left tire well area. We exchanged information and took pictures quickly so I could make my appointment (my door didn’t open fully, but my car was drive-able.) As I drove I was in a haze—I couldn’t believe that yet another “event” had happened in this already stressful time.  I was weak and tired because the previous day I had done my colonoscopy “Prep”-- for all of you who have been through that, you know what I mean. I couldn’t eat or drink anything until the colonoscopy-- which was scheduled for later that day. By the end of the day I was emotionally and physically drained and overwhelmed.

The next day (one day after my “terrible, horrible, no good, very bad day”) I received a phone call from Ric’s doctor that Ric was not going to make it. The doctor explained that Ric’s kidney functions and enzyme levels were not stabilizing so his body wasn’t strong enough to go through surgery and his body functions were shutting down. I looked at my calendar and saw that I had five days until my next cancer appointment, so I booked a flight up to Oakland. My sister and her husband Dave changed all their work plans and commitments as well and drove down from Oregon.

We met at the hospital and began sitting by Ric’s side, letting him know we were there even though there were no responses--not a nod or a hand squeeze or a word. (Thankfully he had been in and out of coherency the week before so we had been able to at least call him daily). But now, he was near the end. Nurses told us he was comfortable and that he was aware of our presence, so we kept talking to him about our memories with him and how much we loved him. We prayed over him, read scripture over him, and played music for him.  For two days we sat with him while also taking turns dealing with all the legal matters and paper work that go along with the “business of death.” For all who have been through this, it is emotionally wrenching and horribly overwhelming. I was so thankful that my sister and I could work through this together. 

On November 30 as we were preparing to go back to the hospital to be with Ric, the doctor called to say he had passed away peacefully. (This is also the day that President George H.W. Bush died).  We knew this was coming, but the finality made me numb emotionally. (By this time I felt like a robot, just walking mechanically through each horrible thing that happened). There was still so much to do and process. We spent the day doing more paper work with the will and talking to lawyers, doctors, pastors, and friends. That night we went to one of our favorite places in my hometown (Moresi’s in Clayton) to celebrate Ric and my dad and their lives. It was the place my dad and Ric loved to take us, and it carries many fond memories of our time with them. I flew home the next morning, with my sister and I having many things on our “to do” lists, but at least I was home.

 I arrived home and went straight to bed--I had barely slept in the past four days. The next morning, Noah called Greg from Colorado telling him that the ball joint on his truck broke and he was on the side of the road waiting for a tow truck. He was so upset that he didn’t want to tell me—because he knew that every day it seemed there was more bad news. But a mama has to talk to and comfort her son (no matter how old). He was not only upset about his car, but about the money needed to fix it and the unrelenting streak of bad news we had been experiencing. He described it in a perfect way…He said, “I feel like we have wave upon wave crashing upon us and we can’t get out of the water to get air.” True that. I wasn’t going to give him some Biblical passage or Christian cliché. Together we admitted that all of this absolutely sucked, that we were indeed in a “shit storm.” No other way to put it. But as I talked to my son who was far away in Colorado and I couldn’t hug him or be there with him, we shared our grief and our pain with God on the phone together. This whole shit storm was something we couldn’t comprehend. We didn’t know why God was allowing all this to happen in quick succession. We didn’t know why expenses were piling up and phone calls always brought bad news, and why more and more appointments and to do lists added to our already stressed lives. 

After we calmed down a bit, I told Noah that over the next days and weeks we would look for the many glimpses that God gives us of hope, beauty and joy. We texted each other daily and told each other what glimpses God had given us that day. We made it through each day. I took my car in to get repaired. I talked with my sister daily regarding our to do lists on the “business of death.” Noah wrote his papers and took his finals. I met my radiation oncologist and found out my treatment plan. We moved forward with glimpses of God’s provision and love; glimpses of joy, beauty and hope.

My treatment plan begins next week. I will have radiation treatments five days a week for six weeks. Simultaneously, I will take a chemotherapy pill twice per day. Once the six weeks are over, I will have a rest and recovery time for about 4-6 weeks. Then I will have surgery to remove the mass and possible chemotherapy and radiation after the surgery recovery. This is a long process—longer than I expected—BUT it is a plan. A plan that has a positive outcome if all goes well. As the doctor was explaining all this to me, I said, “So here’s the deal—I have a graduating senior—he is class president and giving the speech at the ceremony….will this be finished by then?” I mean, I am a planner, and having cancer disrupts all my plans. He told me with a positive attitude that all should be finished by that time.

Now I know that doesn’t mean everything will go smoothly from this point on. Believe me, I have experienced trials and disruptions over and over. Many of you have as well, because people, that is life. It’s how we navigate the journey through the good and bad, the pain and the joy, the darkness and the light that carries us through this life. For me and my family, the only way to do that is through Jesus Christ. Emmanuel, God with Us. When the waves are crashing and we feel like we are drowning, and when the sea is calm and we feel at peace, Emmanuel is always with us. My friend Leah gave me a necklace that has a charm on it that says, “Mightier than the waves of the sea, is His love for me.” God is mighty, even when the waves crash. God is holy, even as the sea is calm. His waves are waves of grace. No matter where we are or what we are going through--mighty God, Emmanuel, reveals Himself through glimpses of joy, beauty and hope. I pray you will find your glimpses this season.

Friday, November 9, 2018

Beauty in the Broken


Our world is broken. We see the pain and suffering in our cities and across the globe. I pray for our world and I pray that people would see hope within the midst of suffering. This week our family got slammed with our own suffering. It came after a beautiful week I had in Fort Collins, Colorado with my son Noah and my husband Greg, plus my sister Karen and my mom Ann. We were there to celebrate Noah’s 21st birthday and my mom’s 80th birthday. It was perfect fall weather—windy and cold and the fall leaves were all over the ground. It was the weekend of the lighting of all the trees in Old Town where all the shops, pubs and restaurants are. It was truly magical—it looked like we were surrounded with stars and snow. We ate well, hiked, toured the campus, shopped, and shared lots of memories and made new ones together. It was a weekend filled with love and laughter.

The day before I left for Colorado I had the biopsy on the mass in my pelvic region. I was told I would hear the results in seven to ten days. I headed to Colorado with my focus on hope and happiness with my family. I didn’t want to think about the mass or the biopsy (but of course it was always in my thoughts)—I just didn’t talk about it.  My week ended with a cancelled flight in Denver and an overnight stay and a rescheduled flight that took me to Phoenix and then home, 24 hours later than expected. While I was waiting in the airport, I received a call from my oncologist’s office with a message saying that my doctor wanted to see me the next day. I absolutely knew what that meant.  I called my oncologist’s nurse and left a message that said, “Hey I know what this means, and I have been down this road so many times, so please call me back or have Dr. Reid call me back and just give me the news.” After I left the message, I had to board my first flight to Phoenix and couldn’t receive calls. When I got to Phoenix, I checked my phone and my doctor had called. He said to call him back. At this point it was 8 pm and I was boarding another plane, but I knew--I absolutely knew that the mass was cancer. I arrived home exhausted and on Tuesday morning (election day), I called the nurse and said the same thing—to please just call me and give me the news. She called me back within the hour and said that they usually don’t give this news over the phone, but she and my doctor agreed that I have been down this road so she told me. The official medical news is that the mass is “adenocarcinoma consistent with original colon cancer.” In real people terms it means that the mass is cancer that originated with my colon cancer. The mass is not on an organ, but it is pushing against my kidney. I went into business mode and made the needed appointments and then contacted my insurance company to make sure they were approving it all.  I now have two appointments next week: one with my oncologist and one with the colon surgeon. They will be giving me my treatment plan which I hope and pray is not extensive. My mind is racing with thoughts of chemo, radiation, surgery—all which I have been through before—and have much anxiety associated with all of them.

Now I sit in the waiting. Waiting. Waiting. Waiting. Something that I am not good at—this waiting. It is hard for me, but I have learned much about waiting these past five years. Waiting means trusting. Trusting God that He knows even when I don’t. I will admit that it is hard to trust God in this. This will be round four of cancer in the past five years. It is unrelenting. I struggle to pray for strength and hope. I don’t have it on my own. I only receive the strength and hope from Jesus. I know it is okay to scream out to God and pour my doubts and fears upon Him. He knows. He suffered before me. He was mocked, misunderstood, abandoned by his friends, beaten, and then crucified. But he conquered all that with His resurrection. He conquered it for you and for me. He knows my pain and He knows yours.

On the evening that I found out that the mass was cancer, people poured into my home. Friends from church, my former church, my neighborhood, our Poway community, my Young Life family. My house was filled to the brim—people on the floor, in the kitchen, up the stairs, in the entry. Angela, Aaron and Wesley played guitars and led us in beautiful, precious worship. We all sang together and cried out to the Lord. My friend Molly led the prayers and my friends interceded in prayer for me with so much love and hope and victory. I had not cried the whole day, but the minute people started pouring into my house I couldn’t stop crying. I cried the whole night. But it was a beautiful cry. It was crying in my pain and suffering. It was also a crying of joy because I am surrounded by this amazing community who overwhelms me with love. A crying of hope because I have a God who understands, who knows, whose arms are around me in the midst of this horrible storm that I do not understand.  Beauty in the broken.

The next morning I had to take our sweet dog Moses to the vet. He had been lethargic and not eating or drinking.  The vet took X-rays and a blood panel and showed me the film of the X-ray and told us he needed an ultrasound. She was concerned about the fluid in his body and what looked like a mass on his spleen. I was breathless and holding back the tears. I couldn’t look at another scan with another mass. It was too much. So Greg took Moses to the ultrasound and we received more horrible news. Moses has cancer in his liver and spleen and has internal bleeding. It is inoperable and the vet said he may have one-two weeks left. We had to come home and tell Micah and then call Noah in Colorado. Two pieces of horrible news within two days. I seriously went numb. I couldn’t pray or call out to God. Thankfully our sweet friend Terri had brought us dinner and the three of us ate a delicious meal and talked together as a family. After that I went into my room and got on my knees with my Bible and I told God that I had no words. Then I sat in the waiting and the quiet. I went to God's Word. I went to a familiar verse—one that I have read many times over the years.

Philippians 4:6-7
Don’t worry about anything; instead pray about everything. Tell God what you need, and thank Him for all He has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.

I sat there and thanked God for who He is even though I don’t understand all that I have gone through. He is still on the throne. He is still majestic and holy. I believe that. I know that. He has shown me so much beauty in the brokenness. So much joy amidst the pain.

The verse says to tell God what I need. So I told Him that I need His peace. This peace is described as a peace that exceeds anything we can understand. That is the peace I want.

Friends, would you join me in praying for peace? Not only peace for me, but peace for many others who are suffering across the globe. Peace for our nation. Peace for our world. Peace in our hearts.
I don’t know what is ahead of me until I meet with the doctors next week. I am in the waiting. But amidst the waiting God has shown me so much beauty in the broken. He is giving me glimpses of His glory. He is giving me friends who stand in the gap when I cannot pray. He is giving me loving friends who bring meals and who drop off flowers and cards. He is giving me text messages from friends who are reaching out with love and hope. Friends who are offering encouragement. He is giving me beauty in the love of my family and my boys. We are all going through this together, but we see the beauty in the broken. And we wait.



Wednesday, October 17, 2018

Scared. Anxious. Frustrated.


Today’s blog post is a major medical update--it is a lot of news and rather clinical. I began writing this blog in 2013 with the purpose of giving my health updates to those near and far--this is one reason I write. The last few weeks have been emotionally and physically draining. Here we go:

As most of you know, I have been battling chronic pain since last May due to a bladder condition called Interstitial Cystitis, along with an inflamed kidney that I have been trying since June to get taken care of. Due to some extremely unprofessional care on the part of some doctors, plus the system itself, and many insurance disasters, I had to wait months to finally be seen by the kidney specialist. 

I will spare you all the many details that I have been chronicling for months in case there is a grievance or even a lawsuit ahead of me. For many of you this is a review, so hang in there.

In June I had a scan that showed I had an inflamed kidney and obstructed ureter. I had this scan because I went to my primary care doctor in extreme pain. She referred me to a urologist and it took five weeks for that to get authorized and for me to be seen. He told me this was partly my IC condition (flare up), but he wanted to refer me to a kidney specialist. This was on July 11. It took my insurance and the medical practice until September 9 to get me seen by this specialist (months of continued pain while I waited). When I saw him on 9/9, he could not find my scan image nor my notes within my chart! Let’s remember that I am at UCSD which is supposed to be one of the top medical institutions in the country! And somehow my images and notes go missing? So he scheduled me for a new scan and told me to come back in three weeks. And then, to top it off, my insurance and his office made many mistakes and I did not get the scan for another month. 

Last week I finally got the scan. I attempted to get an appointment within the week to have the doctor read the new scan and was told, “He has a very busy week.” With a few extremely firm phone calls, they finally gave me an appointment during his “very busy week” to read the scan. I also called the Imaging Office so I could march in to pick up my own copies of the reports and CD's so I could be assured if I took them myself, he would have everything in his hand. I took copies of the CD’s and reports from my scans dating back to April. I am telling you all that I have to be my own advocate in this health and insurance system and so do you. The problem is that it is so exhausting, frustrating, and time consuming.

With my arsenal in hand—the copies of the CD’s, the written reports, advice from my two doctor friends who gave me questions to ask, I headed into the appointment last Thursday.

These are the results of the scan: I have a severely inflamed right kidney and obstruction in my right ureter. (Duh—excuse me, I have known this and FELT this pain since June). The scan also showed a mass in the pelvic region (not attached to an organ) that seems to be pushing on the kidney giving it “distress”, thus causing more pain. The scan did not show cancer in any of my organs, but the mass needs a biopsy.

I left his office with an action plan. He put in orders for STAT/URGENT because I told him that if he doesn't do that, then my insurance takes their sweet time. 

The first order is for a biopsy of the mass. I do not like hearing the word mass. I do not like hearing the word biopsy. 

The second order is for a procedure to put a stint (plastic tube) in the ureter so the kidney can drain, and this should alleviate the inflammation. This will be under general anesthesia, a short procedure and out patient, so no hospital stay. The stint could be in up to three months and he will check by scan to see how the kidney is doing.

So where am I today, one week after I was seen by the kidney specialist? I was given an appointment for the biopsy consult for today, however, OF COURSE, even though the orders were URGENT, after speaking with my insurance yesterday, it was still NOT approved. This resulted with a cancelled appointment this morning.

Yesterday afternoon I spent four hours—equaling my entire afternoon (I told you all that this is a part time, almost full time job) on the phone with nurses, schedulers, my nurse advocate, insurance, and finally Thomas who is a liaison between my primary care practice and insurance. Thomas has been a soldier for me as he intervenes and gets things done when I call with my insurance woes. By the end of this long afternoon, Thomas had all my nurses and schedulers phone numbers and names and was directly calling them and my insurance to ensure that orders and authorizations and appointments are in process and will get done. I know it will happen, because he has done this before with great success.  Thank you Jesus for Thomas!

As of right now, I have a biopsy consult for Monday, October 22, and an appointment for the stint procedure on November 14. I still need to get the biopsy procedure and I need authorization for all appointments.

How do I feel during all of this? Scared. Anxious. Frustrated. Scared. Anxious. Frustrated. On repeat. Exhausted. Overwhelmed. Wiped Out. Exhausted. Overwhelmed. Wiped Out. On repeat.   

I will leave it at that today. I know this is all very clinical, but it lets you into a window of my world right now. Thanks for being my champions with your love, support, and prayers.

Monday, October 8, 2018

X.VIII.MMXIII


October 8, 2013. This is a date etched in our family’s memory. It is the date of my first cancer surgery to remove the tumors in my colon and liver. It was the first time I had ever been under anesthesia, and the first time I had a major surgery. After being diagnosed in March with stage four cancer, and after five months of chemotherapy, on October 8, 2013 I headed into a 9.5 hour surgery to finalize the process. I had thousands of prayers going up from prayer warriors across the nation and globe, all praying for the report that the surgery would be successful and I would come out of it cancer free. And….I did! The liver and colon surgeons told us that the tumors were removed and there was no cancer in the linings or margins. Though the recovery was rough, the news was a miracle! Even the doctors admitted that this was a difficult case, but they were determined, as was I, that we would tackle this and win! Today is the five year anniversary of this major victory.

Two weeks ago my youngest son Micah turned 18. Since he was now an adult, he could legally get a tattoo. He had been planning the design for his first tattoo for a few months. I remember in August, he was talking with his buddy Hayden about their tattoo designs. I said to them, “Remember you have to be 18 to get a tattoo, and a tattoo is for life so be really smart….” And then I remembered, “Holy shit, my kid is going to be 18 in a month—this is getting real!” Micah was serious about his tattoo. He knew what he wanted. He had researched fonts and designs, so he made an appointment with a tattoo artist who had been recommended to him, and one week after he turned 18, he got his first tattoo. His first ink is this: X.VIII.MMX111 on his right forearm. He had told me a few weeks before what it stood for and why he chose it, and I had a long mom cry when I found out, and I still weep as I look his tattoo. He chose the date October 8, 2013 in Roman numerals to commemorate the date of my first surgery when I came out cancer free. My baby (well okay he is 18, but he is always my baby) planned and designed and created his first tattoo to memorialize a date that celebrated my life, but also the life of our family.

Micah was in sixth grade and Noah in ninth grade when I was first diagnosed. Those are tender and difficult ages in which to navigate life, but then they found out I had cancer—a cancer that did not have a good prognosis at all--which made for a frightening and anxious road ahead. I remember clearly the day Greg and I sat down with them and told them the news. We attempted to be completely straightforward and honest about the cancer diagnosis and what the doctors had told us. We explained that I would have chemotherapy, and what that meant—that mom would have some side effects, that I might be weak and tired a lot of the time, and that this would end in a surgery that would entail a two-three month recovery. We told them that we wanted them to share any feelings and fears with us and we told them to please be free to talk with friends or their Young Life leaders or anyone who would listen and help if they felt they couldn’t talk with us about their feelings. We told them that it was okay to feel scared, anxious, angry, frustrated and any other emotion that they might not even be able to name. We told them that this was a new road to all of us, and that we would need to navigate it together. We told them that we would be honest with them through the process and that we would pray everyday as a family. Noah’s first response was, “We will pray through this mom.” Micah was a little more aloof and detached (reminder—he was an 11 year old sixth grader) and he responded, “Yah, we will pray.” We told them to take their time to process all this and that we would be there for them every step of the way.

As chemotherapy began and my body began to change a little—my hair began to thin out; I needed to take naps, and once a week for 48 hours, I had to carry a chemo bag around that was attached to a port in my chest. It was those days that made it more real, and made it look like I was sick. I am sure it was scary for my boys. We kept communication open, and as surgery came closer, I think all of us were carrying anxiety and fear in our hearts that we couldn’t really describe or explain. It was ours to deal with and pray through. It was also during this time that my husband stepped up to the plate in huge ways. He was the one who got up in the morning to make lunches and get them off to school. He was the one who took them to sports practices and games. (Through everything I tried to get to every game, no matter what). He was the one who did the grocery shopping and the laundry and the cleaning. Things were different in our household, and though I tried my best to make things look as normal as possible, everyone knew inside their hearts that things were not normal, that mom was sick, and that mom was going to have a big surgery that she may or may not come out of. I prayed daily (hourly) for my boys—for my boys to have strength, for them to be able to cry, for them to be able to cry out to God as well, for them to keep their faith despite this storm.

I remember with crystal clarity the day of surgery. We had to be at the hospital at 5:30 am, so it was dark and chilly when we left and as we walked out into the morning dawn, my driveway and fountain were lit up with mason jars filled with candles and words like hope, faith, love, and dream written on each jar. This was the work of my dear friend Mary—who had been a rock for me through this whole journey. Of course, my day then started with tears, lots of tears-- of gratitude for all the people who had surrounded me during this time. I was filled with love for these friends, yet scared, but also filled with hope. Friends met us at the hospital, ready to pray all day in the waiting room as I spent my 9.5 hours in surgery and then two hours in recovery. I remember waking up after surgery, groggy and saying hilarious things (I heard later about my non sensical conversations under medication.) But there when I woke up, tired and in a haze, were my husband and my sweet boys, holding my hands and leaning over me with love, faith, and the most precious and beautiful smiles I have ever seen.
   
When we received the news that the surgery was successful, we realized, each in our own hearts and our own ways, what a miracle this was. As I look back at these five years, I am still in awe that I am a walking, living miracle.

It hasn’t been easy. Nine months after the first surgery, in July 2014, we discovered that the cancer had returned, this time in my lung. Once again, we had our family conversation. Once again we came together as a family and prayed. Once again I had another surgery—which was successful-- and for 2.5 years I was cancer free! Then last year, in May 2017, I found out the cancer had returned to my lung again. Last September I had another surgery, this time removing the lower right lobe of my lung, and once again the surgery was successful. Even though the surgery was successful, this year has been extremely difficult. We found out that my cancer markers continue to rise, yet scans cannot find any cancer. It has been a year of waiting, a year of anxiety and a year of fear. And yet, we as a family have learned that when we give this anxiety and fear to the Lord, and we continue to pray, that with Christ, we get through those hard times. We cling to the promises that God will “never leave us nor forsake us.” We cling to the promises in His Word that with His strength we will have courage that we never thought possible. It still isn’t easy. It doesn’t make the fear or pain go away. But it reminds us that we have ONE who suffered before us, who knows our pain and our fears. And we go on, living under the grace and  mercy of Jesus Christ.  

My boys have processed these fears and anxieties in their own ways and they have come out stronger and with an even deeper faith. They amaze me with their hope and resilience. We have all grown through this, and our family’s priorities have changed immensely. We say yes to family and friends and no to anything that is not in sync with our values and that is not life giving to us.

I know my boys have had a rough road as they have dealt with a mom with cancer for the past five years. But when my youngest decides to get his first tattoo with the date October 8, 2013 on his forearm, a tattoo that will be with him for life, a tattoo that screams “I love my mom and I have hope”-- I know that God has been with him, that God has been with us, and for that I am forever grateful. I am blessed. I am blessed. I am blessed.   

Monday, August 13, 2018

It's been a Doozy


Let’s just say that it has been another doozy of a summer. I wish I could report that everything has been rainbows and unicorns, but let’s admit that’s not reality-- for any of us. Last year at this exact time, I spent four days in the hospital, only to get out and return to an eight day stay for surgery to remove my lower right lung in which they had found two tumors. That surgery and recovery were extremely painful and difficult, and I remember thinking, “I am getting old.” But the reality (besides getting old) is that I had endured nine surgeries in five years and the effects were taking their toll on me. Plus, I beat myself up when I don’t recover and get back to my usual self within one day. One month after the surgery, my cancer blood markers weren’t as low as they should have been, so my oncologist began monitoring my blood levels monthly and scanning me every other month in order to track the cancer that he suspected was growing somewhere in my body. (My blood markers to indicate cancer have been going up by 1-2 points each month).  In November I was diagnosed with another condition called Interstitial Cystitis, which I have written about in my blog. It is a painful bladder condition that causes bloating and back pain and much more. (WEB MD has a clear explanation of it). For the past 11 months I have been “chasing cancer” and dealing with symptoms and flare ups due to this IC diagnosis. 

Since the end of May I have been having severe migraines along with nausea and vomiting. I went to the doctor to find out the cause and was told this was a flare up of my IC condition and they also found in a scan that my ureter (goes from kidney to bladder) was inflamed and blocked, thus causing my kidney not to drain properly. Due to authorization and insurance woes, this has not yet been addressed (I still am waiting to see the kidney specialist), which means that I endure the pain every day. I also deal with the extreme distress caused by all the phone calls related to insurance, payments, scheduling, and run arounds with people who have no idea what they are doing. One week in July I logged 18 phone calls within 48 hours trying to deal with the urology department and prescriptions. I had at least two days where I seriously thought I was going to implode. Every fiber of my being was in pain and the stress of dealing with incompetence and no results had my head pounding and spinning.

Now wasn’t that a fun and exciting way to begin this blog post? You probably don’t want to read any more! And as you know if you follow me regularly, I try to stay real and raw, and I don’t sugarcoat anything, but there is hope. There is always hope. I have so many people who say to me, “How do you get through this? I could never do it.” Or, “You are so strong, how do you live through the pain and keep going?”  These are valid questions and I have come to realize this, from the very beginning of my journey…I have options.

What are my options? 
One: I could sleep all day and cry over the pain and my situation and watch Netflix. 

Two: I could get angry at God and the world and everyone around me and live in a state of depression and agitation. 

Three: I could recognize my situation, do the things I love when I have the strength and energy, and love the people around me with intentionality and purpose. And, pray daily for healing and strength to endure that only comes from God.

Of course I choose option three every single day. Now remember this, I don’t feel great a lot of the time, and there are days that I simply can’t get out of bed due to a migraine or lack of energy. But most days, I give myself rest and grace and then I push through to live and love despite the chronic pain. It actually makes me feel so much better to get out, exercise, shower, and do things instead of lying in bed thinking about the pain and allowing my crazy head to think of all the worst case scenarios out there. I also realize that there are many people who simply cannot get out of bed because their bodies are so broken down and the pain is so bad. But now, while I am able, I choose to do whatever I can to push through.

So yes, this summer has been a doozy. But through the pain, I have so many stories of joy and love. I had my wonderful trip to North Carolina with my boys, seeing great friends, and exploring new places. I have been on beach walks with my family and friends and it never ever gets old that I live twenty minutes from some of the most beautiful beaches in the world. I have discovered new eateries in town and had lunches and dinners with dear friends. I have laughed and cried with my women’s group each week as we pray together and hold each other up through the hard and good times. I have watched movies and read tons of books. I have been to Celebrations of Life and weddings. I have had my little ones over to swim and eat popsicles in the pool. I had my son Noah home and had special family times just hanging out with all of us around the table, eating or playing games or just talking. And each week, as another migraine hits or I have another round with insurance, I focus on the joy and the gratitude and the life that I still get to live for one more day.

To end this post, I want to share some good news. On Friday I had a thermography scan. It is a different type of scan that doesn’t expose me to radiation, but uses heat/laser to scan the body. The doctor told me that if she hadn’t known my history of all this cancer, that I am one of the healthiest people she has scanned! She did find the kidney and ureter issues, so I still need to get that taken care of. She found a TON of inflammation in my bladder, renal and pelvis area (due to the kidney issues and from all the surgeries), but she found NO cancer anywhere!  No masses, no tumors, no cells. She said all my organs look good, my bone density is great, and my immune system is strong. She said it is obvious that I eat well and exercise. That night after the scan, I slept the deepest and strongest in months! 

There is hope and I will cling to that. Despite the pain, I will push through, with Jesus as my strength and comfort, because that is the option I choose.