Could use some additional prayers of rest & healing here at the Czech household. The flu or teething bug we thought was passing reared its ugly head again last night in every horrible form possible for our little man. We really need Ed to kick this virus (in combo with two molars halfway through) & soon. I pray Adam & my immune systems are strong enough to stay healthy.
We really want to celebrate Christmas yet before surgery with Adam’s family but every day Ed is still sick makes that look bleak. Obviously, we also REALLY need Adam to be 100% come next week Tue when he starts his prep for surgery.
It is now almost 6:30 am and my 3rd attempt at sleep. This by far the worst illness we’ve had to date with Ed, going on a week. The Big Guy upstairs must think Adam & I can handle a lot of big stuff at the same time…on zero sleep.
We have decided to go ahead with the surgery on Jan. 6. More info on the surgery can be read here.
Why did we decide on surgery before chemotherapy?
The surgeon and the team at the U of M are really impressive. The surgeon feels that even though my cancer has spread past the colon wall, it’s still relatively confined in one area, making it easier for him to get at and remove as much of it as he can. In his opinion, performing surgery with HIPEC before beginning I.V. chemotherapy is the way to go.
We agree with him. (We never did discuss the treatment option that included playing Slayer at loud volumes.)
Of course, if the surgeon sees the cancer has spread beyond what appears on my scans, the surgery is off and it’s straight to chemotherapy. I really want this surgery to happen, so prayers and positive thoughts that my cancer has stayed put for the last month, please. The doctor did his best to reassure us (again) that colon cancer of my type typically does not spread too quickly in 1-2 months time. He shared a study with us to back up his point. (He also had an impressive tan from his vacation last week, during which he called my wife to personally talk and answer her questions. He is well rested and ready to perform the best surgery of his career).
That’s about all for now. I’ll be in the hospital for the Packers first playoff game. The way the Packers have been playing lately, it’s probably a good thing to have doctors nearby while I watch them.
I know I sound like a broken record, but thanks again for all the cards, online well-wishes, positive thoughts, prayers and good vibes sent my way. All of it means a lot. Keep ‘em coming. And while you’re praying for me, include an extra prayer for everyone else going through shit like this. Unfortunately, the hospital is always busy, which means I’m not the only one battling something. Everyone could use an extra prayer or two sent their way.
I thought the longest time in anyone’s lifetime was the last month of pregnancy. Anxious, uncomfortable, anticipation, and restless nights are some of the initial thoughts that come to my mind. Turns out I was wrong, very wrong. The last three and a half weeks have been the longest, and we still have another full week to go before any treatment and CURE will start for Adam. I can throw all those same emotions into this situation, while adding sadness, anger, confusion, worry, stress……and love. While nothing else feels positive in life right now, at least we have love and have felt so much love from family, friends, and the community around us. So many people have been generous to our family and every thought, prayer, or gift has been greatly appreciated and warmed our hearts.
Have you ever told someone they are strong? I have. Looking back, I wonder when I said those words if I ever really knew what I was saying. “You are so strong” I would tell someone going through a difficult situation in life. I was right, after all, without truly knowing what it meant. People need strength just to wake up in the morning when you are hit with a Mack truck diagnoses like cancer, losing a baby, child illness, losing a parent, the list goes on.
I can’t speak here for Adam, but I can see and feel his dark emotional hole he is in. For myself, I have told friends my day is broken into 4 parts-morning, afternoon, evening, and sleep. Not one of these parts of the day are the same. I don’t glide through one day and go to bed saying, “huh, today was a good day”. Nope, hasn’t happened yet. I hope it does again some day. On the flip side, if the morning starts off horrible, I do have hope that by the time Ed naps or Adam comes home, it won’t be as bad as it was at 9 am. Friends, this is strength. Adam going to work in the morning. Every day outings I used to consider normal with Ed, now take a LOT of courage and energy for me to leave the house. It feels good when I do, good for our little man too.
We celebrated and survived Christmas in traditional and non-traditional ways. We went to a beautiful Christmas Eve service at church and enjoyed time with Ed and Adam’s parents. We already celebrated with my family in WI last weekend and we will celebrate as usual next week with Adam’s family. Christmas Day was spent just the three of us (or 4, however you like to think of it). It was one of the few days this entire month we had some quiet time just at home. We also had an adventure with Mr. Edward at an indoor park after nap on Christmas Day….I’ll spare you the details but even Adam said it took his mind off things for a few minutes.
Monday we have a series of appointments at the U of M regarding our official plan of action to remove the cancer. I will leave those details bland at this point and update everyone after we have fully made our decision on how Adam will start attacking the cancer medically (meaning either surgery or chemo the first week of January). We feel pretty strongly about starting his journey in one direction, but either way, he will start a course of treatment the first week of the new year. We will also update here meal train info for those who have inquired. A friend will be setting that up for us next week, as help with meals will be appreciated.
It feels like time has stopped moving and we need January to get here, fast. Adam went in to the hospital on Dec 1 and to say we are anxious for him to start treatment to stop this damn cancer from growing in him is an understatement. I am also hoping starting treatment and our new “normal” will calm some of our anxieties of the unknown towards treatment & healing. No, cross that, I need to start say CURING his body.
We received several gifts or cards with bible verses or uplifting messages on them. I am going to end by sharing two that we have up in our house, reminding us to put our faith in God.
“God didn’t promise days without pain, laughter without sorrow, nor sun without rain. But He did promise strength for the day, comfort for the tears, and light for the way.”
“I will not worry. ‘Be anxious for nothing, but in everything by prayer & supplication, with thanksgiving, let your requests be known to God.’ Philippians 4:6”
Adam here checking in with a quick Sunday evening update.
We went to the Mayo Clinic on Friday for another opinion. We were hoping Mayo’s opinion would match up with the U of M’s so we could forge ahead at full speed.
Well, that didn’t really happen.
The U of M would like me to proceed with the debulking procedure, followed by chemotherapy once I am recovered. Mayo recommended chemotherapy first, then the debulking procedure. The U of M says the most aggressive approach is debulking first, followed by chemo. Mayo says the most aggressive approach is chemo first, debulking second.
Several people on my social media feeds have suggested listening to Slayer at loud volumes to attack the cancer. I might just go with their advice over the doctor’s.
But seriously, if you’re praying or sending good thoughts our way this week, pray that the combination of the doctor’s input, our own research and pure gut feeling helps us make the decision that’s best for getting us on the path toward recovery.
Of course, there’s still the possibility that I may not even be able to have the debulking procedure. If you want more info on the debulking procedure, check out this previous CaringBridge post.
This week will be filled with more research and inquiries with other medical experts. I’m set for a pre-op appointment at the U of M on Dec. 28. We’ll also meet with the surgeon again on that day before making a decision on how to proceed.
People ask me every day how I am doing. My standard response is, “hanging in.” That might not sound like much, but it’s a much stronger answer than I would have given two weeks ago.
For example, we had Christmas with Julie’s family this weekend. I made it through everything – gift opening, Ed and his cousins doing adorable thing after adorable thing, a surprise Christmas caroling session led by our niece Olivia – without breaking down into a blubbering mess.
That’s progress! We’ll see how I hold up during Czech family Christmas.
I don’t want to speak for my wife, but “hanging in” probably best describes her status at the moment, too. Without her love and support (and her tireless work researching and quizzing out doctors), I doubt I ever could have upgraded my status to “hanging in.” The support and kind words from family, friends, co-workers and complete strangers has also been a big boost.
Hello to Adam’s Pack on this rainy Sunday afternoon.
Julianna here to give a quick update. Adam returned to work last week Monday and had two iron infusions. (These will be part of his routine leading up to potential surgery as his hemoglobin numbers need to rise). I returned to chasing Edward around, attempting to potty train him (which by the way, the excitement for him has already wore off.) A few of Adam’s high school friends came to visit us and even were successful at giving us a few belly laughs. These guys, especially our former roommate, is always good at bringing up old stories that NEVER get old to laugh at. Laughter is a great coping strategy for us and feels damn good.
On Thursday, we had our 20 week ultrasound for baby. We received the best news all week – a perfectly healthy baby BOY! This news deserves my one exclamation point. Edward continues to show us how resilient he is and is rolling with our new schedule of visitors. He & I also returned to our ECFE and his preschool class. We are blessed to have such wonderful teachers (and my mama friends) in our lives.
We had some fun decorating cookies with a few of my friends and their 2 year olds on Saturday. Followed by my sister’s family coming for the night to baby-sit Ed. Adam & I had a Christmas date planned for over a month and we have decided not to cancel plans for as long as we can. We went to our favorite restaurant, Bar La Grassa & to the “Christmas Carol” at the Guthrie Theater. Both were amazing venues as always, and we pushed through a few rough moments together to have an overall nice time. We want to keep busy and life as normal as possible. I disagreed with Adam at first on not cancelling any plans, just wanting to hole up in our house and never leave again. However, I’ll give Adam a “you were right, honey’ and have come around to seeing the importance of this.
Today is more of the same with awesome friends trickling in with meals and hugs. It is Packers Sunday so of course, football is on already per our usual. Adam’s parents will arrive tonight to help with an appt tomorrow morning. We are meeting with an oncologist at the U of M to hear what he has to say and it is really more of a “meet and greet” with him. Adam will have two more iron infusions this week. On Friday, we will head to Mayo with Adam’s parents for a second opinion.
My motto on this journey is this is a marathon, not a sprint. We want to extend a heartfelt thank you again and again to everyone who has helped us and been generous in supporting us through prayers, messages, visits, meals, cards, and other donations. We appreciate them all and it makes the burden a little lighter. In the weeks to come, a friend will be creating a Meal Train. I would like to wait for more information from the oncologist and dietitian on what the best diet will be for Adam. We have been blessed by an overabundance of meals and food for the time being. We have some amazing cooks in our lives, YUM.
Keep the prayers rolling, we feel them and need them. We are sleeping well (the pregnant wife not as much as the others, but that is to be expected). We need Adam’s hemoglobin levels to rise, we need to continue to rise out of our dark emotional hole, and pray for guidance from the doctors on a course of treatment. I ask you pray for Adam to be filled with HOPE, peace, and strength. Please also hold us up in your prayers to enjoy Christmas and our celebrations with our families.
One of the recommendations from an oncologist at United Hospital was to see if I was a candidate for Debulking surgery. Debulking is, basically, having a surgeon go in and remove as much of the cancer as possible, then dump chemotherapy directly inside of me to try and get as much of the rest as they can. Very few hospitals perform this procedure. It’s aggressive, it’s major, and the recovery period is long.
On our way home after getting discharged from the hospital on Thursday afternoon, I received a call from a surgeon at United. He was able to get me an appointment the next day with a surgeon at the University of Minnesota who performs Debulking surgeries. We met with this surgeon on Friday and he agreed that I was a candidate for the procedure.
However, I still have several hurdles to clear before Debulking is possible. For one, I need to get my hemoglobin up. I’ll be getting iron infusions twice per week. Also, on the day of the surgery, the surgeon begins by going in with a camera to get a better look at the tumor and the other cancerous cells that surround it. If it looks like the cancer is too widespread, he will not proceed. Based on the CT scan, the surgeon believes Debulking is a realistic possibility for me, but there can be things that do not appear on a scan. That’s why he goes in with a camera before beginning the operation.
I’m penciled in for the Debulking surgery on Jan. 6. Meantime, we’re waiting to hear back from Mayo so we can get another opinion. Perhaps Mayo will agree that Debulking is the way to go. Perhaps they won’t. We shall see…..Mayo does perform Debulking procedures, but only at their facility in Scottsdale, Ariz.
So that’s the medical update. Hopefully I didn’t screw anything up too badly.
In other news, being back home has been great so far. My son keeps me laughing, my family and friends keep me hopeful, Matilda the Bulldog keeps me entertained and my wife keeps me all of the above (as well as organized). I also returned to work today. I’m incredibly lucky to work for the Minnesota Corn Growers Association. It is a first-class organization made up of amazing and caring people.
Signing off for now. Oh, but before I go, some of you know that I write for a Green Bay Packers website called CheeseheadTV.com. I wrote a little something about my cancer diagnosis for the site today. It’s raw, it’s emotional and the language gets salty in spots, but I wanted to post a link here in case any of you wanted to read it. If you’d like, you can check it out by clicking here.
THANK YOU THANK YOU THANK YOU THANK YOU a million times over for all the thoughts, prayers, well-wishes and messages. I read them all and appreciate them more than I can say.
Julie will have a more detailed update in the coming days, but I just wanted to post a quick note thanking each and every one of you for your thoughts, prayers and good vibes since this whole mess started. What might seem like a simple note to you truly means a lot to me. I read them all and they help. Please keep them coming, whether it’s on Caring Bridge, Facebook, Twitter, text, phone call, smoke signal, Morse code, or all of the above.
Please include Julie in all thoughts and prayers. She needs as much, if not more, strength than I do. She is amazing. And while you’re at it, include family and friends as well. They have been unbelievably helpful and we’ll be leaning on them even more in the future. We need all of them to remain strong.
Ok, so I’ve pretty much asked you to pray for everybody, but I think you know what I’m saying.
Again, THANK YOU to everyone for your support so far. Ya’ll are the best.
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.