Timeline
November 14, 1975 birth
November 15, 1975-2011ish pretty normal, healthy life
Sometime in 2011- Leonard is complaining about a side ache. He has had it before. It seems to get worse after eating a large meal full of bad food. Kind of hard to feel really bad when the pain is brought on by poor choices. I had had a gallbladder attack. Both of my parents had their gall bladders out. Countless friends had lost theirs. I'm no doctor but it seemed his pain was the result of a poor American diet.
I talked him into going and getting his gall bladder looked at and the scan came up clean. This is probably the worst result he could have gotten. This cemented a few facts in his mind.
1. Doctors order unnecessary tests
2. He is fine
3. Don't worry about the side ache
Fall 2012- The side ache is back. This time it seems worse and more random. Nights are bad. But Leonard always had insomnia so he struggled alone. I would wake up in the morning and he would casually mention he had had a bad night but we would go on and not give it much attention. (If I let myself reflect on this too long, I would feel guilty but I can't entertain that emotion yet/ever.)
January 2013-I put my foot down and scheduled him an appointment. He went and saw our doctor's Physician Assistant. After a very cursory examination, she ordered an MRI since his liver scans had shown strange findings before. Leonard went home mad since they made him wait and still didn't have many suggestions.
THEN THEY NEVER ORDERED THE SCAN.
This was the get out of jail free card this healthy 37-year-old man wanted. Remember the truths he has established in 2011? So he didn't follow up and I tried to respect his wishes.
April 2013- The pain is still here and he seems really tired. (I didn't mark the fatigue as anything significant until reviewing all the symptoms later.) I worried enough about him that I actually mentioned it to friends and family. Mentioned that I needed to force my man into the doctor and we would all giggle about how stubborn boys can be!
May 2013- I give him an ultimatum. Either use this medical insurance that we are working for the state to have or get a job in industry making more money!! He laughed and let me research GI doctors and made him an appointment. He was going in the week after Memorial Day.
Memorial Day Weekend 2013- We fly to Chicago for a little get away. We get a great hotel downtown (Raddison Blu) and plan a day of walking to see the sights. It was a bit rainy so we loaded the back pack with water bottles and rain coats and set out for a 7 mile walk around the city. (I know it was 7 miles since my guys were complaining and I mapquested it and realized I had drug them around further than I thought!!)
Leonard carried the backpack since it was too heavy for me. Or at least I allowed him to think it was. :) We took the commuter train out to see where I was born and when we were heading back we had nearly an hour to wait until the next train. The boys and I played hide and go seek in the Water Tower park of Western Springs. Leonard sat on the bench. UNHEARD OF! When we got back to the hotel, Leonard went to bed and the boys and I went swimming. AGAIN UNHEARD OF! But I didn't worry too much since he hadn't struggled too much during the day and had even played basketball with the boys at 2:00 the morning before when we flew in.
May 29, 2013- Leonard goes and sees the GI guy. They think it is acid reflux and put him on Prilosec. However, the doctor orders an MRI, "just to be thorough". I got a text from him while he was waiting for the doctor and he says "In exam room waiting. Need to lose weight." My response "Is that a medical decision or just something you are randomly worried about?" His response, "Something I am worried about."
June 4, 2013- I get him into an MRI.
June 5, 2013- Doctor calls the house myself and asks for Leonard. He won't tell me anything so I wait. By the looks of my cell phone record, I wasn't too patient. Leonard gets out of a meeting, calls the doctor and he gets admitted for what they think is a liver infection.
June 6-8, 2013- I think a million doctors came in and out of the room. No one could tell what was going on. They sent him down to surgery for the gall bladder but the surgeon cancelled the operation since he didn't like what he saw. Every doctor that came in asked the same questions and Leonard said no to them all. He didn't have any symptoms other than this pain in his side and these scary looking scans.
During one of the interrogations sessions, I got the idea that this could be serious. I left a bit teary. That doctor called in another doc to "calm me down." He kept saying, Leonard was at ZERO risk for something serious and not to worry. I felt much better though but did jump on the internet quickly that night and researched the what ifs. It was the then that I realized the 1% chance WHAT IF was really really really bad. So I joined Leonard in ignoring that possibility. They do a biopsy the next morning and discharge us to wait for the results at home.
June 9, 2013- Carter goes to scout camp and. Leonard tries to go to work but only makes it about a half a day. We have an appointment with the Liver specialist the 13th.
June 10-13, 2013-Leonard can't work. Every symptom that the doctors had been asking about started to appear.
June 13, 2013- We go to see the doctor. Our biggest fear is that we won't have a diagnosis. Leonard was so worried that this would be another dead end and would have to just live with the pain.
The nurse called us back and put us in a room to wait. Dr. Koep swung the door open and said "You have a cancer" before completely stepping into the room. He fielded as many questions as he could but was pretty vague. He kept saying we needed to talk to our oncologist.
So we went to the van and both cried. I got out and called my mom and he called Mike. Then we just stared at each other. What now?
About the time we were pulling out of the parking lot, Dr. Koep's intern knocked on the window. He had copies of all of our medical records. He said we would need them and then said we should get our affairs in order. I told him we had life insurance and were just fine! ARE YOU KIDDING ME?!?!
Crazy thing, we decided to go see a movie since we thought we would get
an appointment with oncologist and didn't want to come back downtown.We saw "After Earth" which is a silly little movie with the theme that fear is a choice. Hmm...
No call from the oncologist so I headed back to the GI doctor and had them get our referral processed. They made an appointment for June 21st. HOW IN THE WORLD COULD WE WAIT THAT LONG?!?
We called Bishop Thelin and asked that he meet us and give me a blessing. I was told that I could endure this trial and that I could raise these boys. My soul longed to be told that we would be ok but that answer never came. I felt strong and capable and scared.
June 14, 2013- We decided to wait to tell the boys until Carter was home from camp. One of the craziest things? On the plane home from Chicago I read a story in the In Flight Magazine where a young father was diagnosed with cancer while his son was at Philemont. They had decided to helicopter the kid out and tell him. I told Leonard on that plane not more than a month before that if he ever got cancer I would not interuppt my son's camp. So we stuck by our original thought. Their childhood was over as soon as we told them so we waited.
June 15, 2013- We tell the boys. Beyond what I can write...
When we first got diagnosed I told Leonard we would NOT research on the internet. (Remember I already had and knew he was terminal. He did not know.) That night, Leonard wanted to know. So we looked. We typed in choloangiocarcinoma and within seconds my hero knew he wasn't going to make it. I knelt by his chair and we just cried....
June 16, 2013-Leonard has a pain spike and we go to the emergency room. It is so scary. They rush him back and scan him all over. They administer some heavy duty pain meds which he hates. My parents turn back around after leaving my home and meet me back in the hospital. They are there when we learn the cancer is everywhere; his bones, his liver, his lungs. We hadn't even seen the oncologist yet.
June 21, 2013- My parents and Leonard and I meet with Doctor Paul. He lets us know that we are terminal but that with chemo therapy we could have 18 months to 2 years. Leonard is young and healthy. That would get Carter to 15 and Kirby to 13. For some reason, that seemed so much better.
He said we just had to keep him pink, meaning that his liver couldn't fail. I mentioned to the doctor that I thought the sides of Leonard's eyes looked yellow but he didn't agree. We went home feeling great.
June 24, 2013- I brought Leonard to Mayo Clinic for a second opinion. Dr. Halfdonnerson agreed completely with Dr. Paul. As we were leaving he said that Leonard looked a bit yellow and he would like to test his billirubin. We agreed.
June 25, 2013-Dr. Halfdonnerson called us himself and said the numbers were bad and he suggested we do a stent to open his liver. We agreed and scheduled it for June 27.
June 27,2013-He has his procedure. The doctor is pleased and states that Leonard should be ready to go home in a bit. He gets paged out of our room. As soon as he leaves, I turn to Leonard's friend Jared and frantically say "I don't think he should come home." I'm worried about how I"m going to tell the doctor. The doctor comes back in and says that Leonard is having some problems coming out of anesthesia and he would like to admit him. I quickly agree. They let Jared back to administer and bless Leonard. He is not doing well. They transfer him to his room and he is in agony. His pain is horrible. I beg the staff for a morphine bollus as the drip is going to take so long. Leonard just grasps on to me and begs. It was awful. The staff was wonderful. The pharmacist himself ran the bollus up and Leonard got relief.
He stayed 3 days trying to get pain under control.
June 30, 2013- We come home. My parents are coming and staying the night for days in a row. Leonard gets such severe pain he can't stand up and loses the ability to walk.
July 1, 2013- Another test shows his numbers are bad again and he gets another stent.
July 5, 2013- Numbers are still not good but we try a round of chemo anyway.
July 7-10-We end up back in the hospital for pain managment. He spikes a very bad fever in the night. He wakes up and doesn't remember anything. He can just tell by looking at me how bad it was. The pain management team comes in and has to break the news that he can't handle anymore chemo therapy and we are put on hospice.
July 10- I take him home to die. My parents move in. His family visits. We spend two weeks saying goodbye. We love. We pray. We cry.
August 6, 2013-My dearest heart is released to his Father.
August 7, 2013-current We are trying to survive.
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