How Did We Get Here?
December 3, 2015
What a nightmare. What else can we say right now. Please throw some cold water in our face and wake us up from this horrible, horrible nightmare. I will do my best to convey the details of what we know in the best way possible for you to read. You are Adam’s Pack. Adam’s Pack of family, friends, co-workers, supporters. He is the writer, not me, but I have earned a few degrees behind my name so I’ll do my best. I’ll also do my best not to use exclamation points, my husband in communications hates them and says I only get one a day.
He looks healthy.
Adam had some trouble sleeping on his right side or stomach for the last couple weeks. He had complained of being more tired the last several months or longer but he/we attributed it to the fact he works two jobs, has a toddler, a demanding wife and social calendar. He complained of feeling like he had the flu or just feeling very full, bloated the last few weeks. He was getting winded going up stairs, hunting early November and most recently, going up the stairs Monday night at Williams Arena for a Gophers basketball assignment. Monday night he came home and slept downstairs. He had trouble sleeping and woke up with the pain going into his shoulder. I (Julianna) told him he needed to be seen now, concerned it was his appendix or gall bladder because the pain was on his right side.
The clinic doctor ran blood and urine tests, which came back negative for anything. They set up a cat scan to check for gall bladder that afternoon but soon after, they said his hemoglobin was very low, 5.8 (normal for male at least 11+) and to head to United Hospital ER asap. He drove himself and soon after, decided Ed and I needed to go there too against his wishes. Our family jumped in to come pick up Ed from the ER. Ed, being the rockstar he is like his dad, did wonderful at the ER. That is where the story goes south.
ER, Tuesday Admission to United Hospital
First thoughts were Crohn’s Disease or Colitis. CT scan soon showed a large tumor in his colon of cancerous type and we were admitted, not even 8 hours after he went to the doctor at 7:40 am. The large of amount of blood lost was from the tumor growing in him, even though Adam never noticed anything unusual. The tumor is about 3 feet in his intestines, a sneaky little demon growing in him for years. We will learn this cancer is nothing he has done or not done. PURE BAD LUCK.
The rest of Tuesday is already a blur. He had a blood transfusion and prepped for a colonoscopy on Wednesday. I arranged for family to watch Ed and we both spent a sleepless night at United. Thankfully the prep went well for Adam, as well as this could go. He was sedated but watched the entire procedure. Quickly learned the tumor was inside the colon, 5cm in size. It is not blocking it but concern it could in the future. Soon after, the oncologist met with us and bluntly stated Adam has cancer. It has spread to the lymph nodes and abdominal cavity. When asked the chances of his opinion being wrong, he said he was rarely wrong but we needed to wait for the biopsy results.
Boom. In less than 36 hours, our 6 years of beautiful marriage and young family is flashing before our eyes. All we could do was hold each other, cry, and talk about real adult life and death. I am praying and pleading with God to keep Adam here. I need him here as does our little man Ed and our baby coming this spring. I wanted the world to stop right then and there but it couldn’t. I had a toddler at home who needed to see his mama. We are blessed already with an outpouring of support via texts, calls, and last minute calls to friends to give me rides home and back to the hospital, run errands and help with Ed while we waited for my parents to arrive to take over Ed duty. Adam needed a little time to process this alone at the hospital and then his parents spent most of the evening with him. A Colon and Rectal Surgeon met with Adam and his parents, agreed with what Oncologist said but did offer them a glimmer of hope. The surgeon said he has seen chemo treat aggressive cancer, it is rare but possible. Chemo for colon cancer patients tends to be more tolerable than others, but no walk in the park either. Our Pastor kindly paid a visit to Adam and has been checking in with us.
Last night was long. I quickly realized how difficult this journey will be on me to take care of myself in addition to being Adam’s caregiver, friend, and mommy to our sweet babies. This isn’t about me, but Adam is my rock in every sense a husband and friend is. I will need to learn to sleep alone at some point in this journey, probably sooner than later but as long as I can be next to Adam, I am okay. We take turns I guess being strong, but right now, this guy still doesn’t know how amazing he is and I regret if I haven’t told him enough. If you don’t know, know now. Adam is AWESOME. Hard working, never complains, loving, never yells, patient, comforting, calming, helpful, supportive, sprays poop off cloth diapers, mops the floors, does the dishes, grocery shops and so much more. This guy would wake up with me to nurse Ed in the early weeks when it was so painful all I did was cry. Every 3 hours, then went to work all day. If you haven’t seen him with Ed, you need to. He is the best Dad to this little guy! He supports us in every way and reminds us to have fun. Adam never took life too seriously until we are told cancer wants to take it away. Laid back guy as you all know. I hope that laid back guy can make a comeback.
Today, Thursday Dec 3
The biopsy results confirmed the horrible news we had been given already. Stage 4 Colon Cancer, spread to lymph nodes and abdominal cavity. Oncologist gave us treatment options and the GI doctor also gave us some input which we greatly appreciated. Obviously chemo. The other option is a Debulking Surgery which can possibly cure, hopefully treat to extend his life past another 2 years. Chemo is 1-2 years. We don’t know stats on how many people go on to live a full healthy life after this surgery and to be honest, I don’t want to. They do this surgery because it is an option to cure this demon cancer and if God gives us 1 year, 2 years, 5 years, 20 – I will take those days and moments with this big guy. We have heard success stories of Stage 4 Colon Cancer and for now, I just need to know it is possible and we have to fight.
Adam has to fight. He is a strong guy. He isn’t in pain other than some discomfort now from the tumor when he lays just right at night. The GI dr gave us, or at least his parents and I, more HOPE that we need to seek second and third opinions and go to Mayo and U of M to speak to these surgeons who specialize in this type of surgery. It is major surgery. The GI dr was more positive that a surgeon isn’t going to turn away a 34 year old male with a young family and if he does, find someone else who will fight to help us. It is open surgery and would involve a week hospital stay, assuming no infection. A month recovery. The Colon and Rectal surgeon is also advocating for us and called the U of M at noon today and called us on our way home from the hospital today. We have an appt tomorrow morning for a Cat scan of his upper body to make sure it hasn’t spread. The oncologist was at least hopeful there it hasn’t spread elsewhere based on CT of abdomen. We will then have a consult with one of these surgeons, not sure their name yet tomorrow morning. The care coordinator at the hospital is working on getting us in at Mayo next week to meet with their specialists which will be a 2-3 day trip to Rochester. The GI dr, surgeon from United, care coordinator, my mother in law’s former doctor she worked with are all advocating for Adam. They are pulling strings to get us in soon to Mayo. The oncologist assured us 1-2 weeks for cancer won’t be detrimental but to us, 1-2 weeks is like 1-2 years right now. For now, we take this day-to-day as best we can. We want to get this ball rolling as we are expecting number 2 April 30 and we simply can’t be in different hospitals at the same time. Nope.
My journals might not be pretty to read, I don’t know that anyone’s are. Friends who have gone down this journey before us have shared the emotions will come in waves and wow, are they big tsunami type waves for me. Adam describes his life right now as a huge dark cloud hanging over it and who can blame him. This is where you all come in to help me, Edward, our baby I am carrying at 19 weeks along and of course, Matilda who completes our little family. We need prayers. Our parents, siblings, nieces and nephews need prayers. We need your encouragement to keep going. We thank everyone already for the outpour of texts and calls of support and offers to help. We read them all and listen to those messages, it is simply really painful to talk and say this out loud all day. This is a long journey and please know, we appreciate you and will ask you for help. For this weekend, we are going to concentrate on us. Take Ed on the Polar Express Train with Santa, hang out at home, decorate the tree, and hopefully go to Christmas on Holz Farm near us Sunday. Love to you all, XOXO.