On Friday August 18th, Karen went to the doctor to check out some pain she'd been having in her side for awhile. No big deal, didn't even see our normal doctor. At first, she thought that maybe it was a gall bladder problem. So the physician seeing her ordered an ultrasound of said organ to check things out.
I was at home, starting to cook some chicken and bell peppers for supper, when our primary doctor Liz Westby called our house and asked for Karen. Karen had stopped by the store on her wawy back from the doctor, and Liz asked her to call her on her cell phone as soon as possible, as it was Friday and close enough to five o'clock that Liz would be heading home soon.
I knew that Liz couldn't tell me what was going on thanks to patient privacy rules. But I also know enough about how the medical field works to know that for a doctor to give us her personal cell number and tell us to call ASAP is not going to be good news. I wondered if her gall bladder was in serious trouble.
Instead of waiting for Karen to get home, I called her and gave her Liz's number. Then I waited. I kept cooking but my mind was racing through all of the terrible things it could be.
Finally Karen called back. She was near home and asked if I could meet her in the driveway. When I did, as we stood by the open driver door, she told me that the ultrasound had extended to her belly, and they had a strong suspicion that they had found ovarian cancer.
The words hit me like a brick, and honestly the first word that came into my head was "fuck". Then things just kinda went numb.
Now, as a Mayo nurse - an oncology nurse - Karen knows more than the average citizen about cancer. As the husband of a Mayo cancer nurse, I know the stories of what she does. Sometimes she comes home from work and tells me about the patients she has taken care of. Not in a way that compromises their privacy mind you, but in generalities. For example she'll tell of a farmer with cancer and the wonderful family members supporting him. Or the lady who probably won't live much longer but is such a delight to care for and talk to.
She also has told of too many younger people with kids and lives and futures that have been upended by a cancer diagnosis.
"There but for the grace of God..." we'd say.
As a medic, I saw my share of just how fragile life is. Same with Karen. We know better than most just how precarious getting through the day can be. Most people assume that their days will be predictable. Work, vacation, meals... those things we humans can wrap our heads around. But sudden events like a car accident or a cancer diagnosis can through everything out of whack.
It turns out that even when you are acutely aware of that possibility, when it actually happens to you, it will still knock you so far off of center that "normalcy" looks like even more of a mirage than it did.
Our primary, Liz, being the wonderfully amazing doc that she is spent Friday evening and Saturday morning helping us make arrangements for what would be coming in the next week. Some of Karen's nursing friends also went out of their way to make calls and help coordinate. Labs, tests, procedures, even a surgeon was contacted and given a heads upp about the cases. As such, by Friday night things were pretty much in place to get Karen in first thing Monday morning for a CT scan. That would give the doctors a clearer picture of what they were dealing with.
We spent the weekend in a haze. I spent some time online learning what I could about ovarian cancer. But I had to stop. It turns out that there are many kinds of ovarian cancer, and prognosis and survival rates were dependent on the type and what stage it was at. Naturally none of it was simple. There are four types of stage 3 epithelial cancer for example. So until we knew what stage at least, everything I was learning was not particularly helpful. I mean, if it was a stage 1, then 5 year survival for some types was over 85%. But if it was a stage 4, then the odds were not in her favor. So I just stopped looking.
But it was hard for both of us not to go to the worst case scenario. After all, everyone we had talked to said that surgery was pretty much inevitable. The biggest surgery Karen has ever done was to have her wisdom teeth out. So we spent the weekend talking over fears of not waking up, or even worse, a quick "open/close" surgery where they find that there's nothing they can do once they get in there.
We told the kids that there was something wrong, and that there would be more tests and probably a surgery, but we didn't mention cancer speccifically. After all, in the past couple years they've seen both their Nana (Karen's mom) and Grampa (my dad) go through cancer. Grampa even stayed with us during his treatments, and they saw how rough it was on him first hand.
Monday finally came and we went in for the CT.
Here's where things get foggy for me personally, so I'll just write what I remember.
The CT confirmed that things were not right in her belly. It was most likely cancer, though they kept deferring absolutely calling it cancer until surgery. And there would definately be surgery on Friday. They told us that by the way the CT looked they would catagorize it as a stage 3 cancer, probably epithilial, but not sure which stage 3 exactly. Karen was relieved by this, as she had been preparing to hear that it was stage 4. I was less relieved by this, as stage 3 still sucks. But as is the way of my wife, we focused on the positives that were happening.
Wednesday we met with the surgeon, Dr Bakkum. She and her team were wonderful. We got to see the CT. From a medical standpoint, it was fascinating. There was the heart and lungs and aorta. Then came the ovaries, usually measuring in at 2 cm or so and invisible to CT, these measured 12-14 across and even I could see that they didn't look right. There were lymph nodes that had probably cancer on them, and the appendix may have a spot or two. Peritoneum, spleen and diaphragm would also need some work. The omentum had some thickening called an omentum cake, and we all agreed that it sounded like the worst possible dessert ever. But the liver looked pristine, and other vital organs also appeared to be as yet untouched by the disease. So Dr. Bakkum said she felt comfortable going ahead with surgery. She told us that she'd start with a small incision to get her hand in and feel around on the intestines. If she felt those were clean enough, she'd continue with the full procedure. But if she felt any oddities, she'd stop and have Karen do some chemo first before going after the tumors. This gave us some peace of mind about an open/close procedure, but we oddly found ourselves hoping for the longer, more involved surgery.
As I said, from a medical standpoint it was very interesting to see and learn about. But then it was also all happening to the woman that I love, and that made me sick to my stomach and made me want to absolutely freak out.
Thursday came and we met with the medical oncology team who gave us some options about what would happen after surgery. They told us more about the various kinds of chemo treatments Karen could go through, pros and cons and studies that show, and all sorts of information that Karen mostly already knew and I took in to try and process.
There was the possibility that during surgery a post would be put in her belly that allowed for interperitoneal - or IP - chemo. This would be the most aggressive type, but came with higher toxicity and more negative side effects. Otherwise she could go with IV chemo that wasn't quite as harsh but was pretty much as effective. We had talked over these options with the surgeon as well, and kind of settled on putting the port in. If she needed it, it would be better to have it in place and if she didn't it could be easily removed.
That brought us to Thursday night. Neither of us were hungry. Karen's mom had flown in earlier that week and would be staying with us. My dad and sister came up Thursday for support. Everything was coming together for Friday. The plan was for my sister to come with me to the hospital to make sure I ate and was ok. Karen's mom would keep track of the kids. Dad would be where he was needed. Sleep didn't come easy for me, and I spent a lot of the dark hours watching Karen try to sleep. I finally stopped checking the clock at 2 am.
At 5 am Friday morning, I woke up before my alarm and walked into the living room to find Karen all dressed and ready to go. After a quick shower I was also ready to go. Saying goodby to the kids took awhile though, as they were also a bit freaked out by everything. We had told them shortly after the CT results about the cancer diagnosis, and there were many teary nights of talking about everything that was happening. All we could do was tell them what the doctors had told us. It would be a six hour or so surgery and they would take out all of the cancer they could. Then Mom would do chemotherapy and kill off the rest of it. We tried to stay as positive as we could. Still there were tears, because no matter how you slice it, cancer is scary.
We were finally able to get in the car and go, and spent a quiet and teary drive to the hospital. Steph (my sister) followed behind us and had come fully stocked with snacks and a pillow and other things to make sure I had what I needed throughout the day.
We were met at the hospital by Julie and Pastor Anjanette. One a co-worker turned close friend, the other our pastor turned close friend. So Karen checked in at the front desk, and then she and her entourage headed for the surgical floor.
I remember that there was conversation as we waited, but I can't recall the topics. I remember that Anj led us all in a prayer and Karen got called back just as the prayer finished.
K and I went back to her pre-op room and she got into a pretty purple gown. After what seemed an eternity, they came to get her.
Just like that, She was off and I was waiting in a small room with Steph and Julie. Julie went to work at some point. Steph was at the ready with food and things. I was anxiously awaiting word on whether surgery would proceed or not. They came to get her at 7:30. In the waiting room, they had a monitor set up that relayed the status of the patient. Karen was identified only by the number 88900, and until 9:27 was listed as "in the OR". At 9:27 her status changed to "procedure started".
I sent out updates to everyone on my list. Yes, Karen had made me a list of contacts so I wouldn't forget who I was supposed to be contacting, because she knows me.
Once again, time had slowed to an unbearable pace. After what seemed like hours, we were told that Dr. Bakkum was comfortable moving on with the rest of the surgery. This was welcome news, if a little frightening, and I finally felt like I could go get something to eat. It was only 10:30. Steph and I walked over to Pannekoeken and I had a bacon pannekoeken.
Then, instead of going back to that miserable, windowless, time sucking waiting room, we decided to go donate blood. After all, Steph and I are both O- universal donors, and Karen would probably use a couple units from the blood bank, so it seemed fair to go make a deposit. Thanks to modern technology, I could be reached by the nurse communicator anywhere I went, and I didn't want to go back to that room.
We made our way to the blood donor center, which is in walking distance of where Karen was, and got started. I went through just fine, but Steph had low hemoglobin- a story you should ask her about. I forgot that when donating blood, one of the go to questions they ask you to pass a little time is "So, any big plans for today or the weekend?"
So the unfortunate people taking my blood got to hear all about quite possibly the shittiest week in my history and that as I sat giving blood, my wife was having her insides scraped out of a deadly disease. They weren't quite sure how to answer when I asked them the same question.
By the time that was done, it was approaching the past lunch time. All of us non-surgical candidates had decided to meet at Pannekoeken for lunch, since it was across the street from the hospital, and Steph went to pick up Nana and the kids while I went back up to see how things were going.
Patient 88900 was still listed as "procedure started" but I did get a call from the nurse coordinator that everything was going well. Ovaries, tubes and uterus were out, and they were moving on to the omentum.
I walked back to Pannekoeken and got a table for our group. Dad, Nana, Steph and the kids all arrived soon after and we looked through the menu as I updated them on what I knew.
I ordered a bacon pannekoeken, because that looked good. I ate about half of it.
Afterwards, Dad headed for the waiting room while I drove Steph back to her car so she could take Nana and the kids home. When I finally got back to the waiting room, Dad had been joined by Julie, and the little miserable room was closing down for the day. 88900 was still listed as "procedure started", and we had been given the room number that Karen would be moved to after recovery. 5-422. So we headed up to the fifth floor, found room 422 and went in to sit down. It was a teeny tiny room, and within a few minutes, Julie had gone to see if Karen could be moved to a bigger room. Another call came in from the nurse communicator saying things were going well.
Soon it was around 3 pm and we were moving to 5-401, a GIANT room that would do quite nicely. I was hoping to get a call soon that she was moving to the recovery room, but the next call that came didn't follow that script. They said it would be a couple more hours.
A couple hours later I got the word that things were taking a little longer than anticipated, and it would be another hour or so.
A couple hours later, word came down that they were needing to do a bowel resection and it would be another hour to hour and a half.
A couple hours later and I heard they were putting her bowels back together and it wouldn't be long now.
Then a little after 9 pm, the nurse came in and told us that we'd be moving again, this time up to the ICU. Apparently when a patient is under anesthesia for more than twelve hours, they get a free pass to the Intensive Care Unit to make sure that recovery goes ok.
So we gathered our things and headed up to the ICU. Dad headed back to the hotel to try and sleep at my request. Steph had taken the kids over to the hotel for a slumber party and movie fest. Nana joined Julie, Anj and I in the ICU room as we waited for word.
Finally at 10:30 pm Dr. Bakkum called to tell me that the fellow was putting in the final stitches and she'd be up soon to talk to us.
13 hours. 13 hours of surgery. Each and every one of those hours seemed like five or six to me. When Dr. Bakkum came up, I hugged her. What endurance it must have taken to stand over someone for that long and pull out disease. We asked her how and when she ate or took breaks. It seemed like it would have been a herculean task, and yet she and the other surgeons looked fresh and perky and chipper and like they hadn't just spent more than half a rotation of the planet operating on my wife.
She went into the details of why it had taken longer than expected. There had been some cancerous lymph nodes against parts of the aorta that were rather delicate to remove. There had been more diseased tissue than anticipated. There had been some penetration of the diaphragm by the cancer that technically classified it as a stage 4 cancer.
Wait. What? My mind raced a bit. The stats for stage 4 suck. Stage 4 is fatal in four out of five people. This can't be stage 4. This is not in the script!
BUT - Dr. Bakkum continued - it is still pretty much a stage 3C. And she was very confident that she and her team got the vast majority of cancerous tissue out of Karen's body. She said that everything that remained was microscopic and could probably fit into an eighth of a teaspoon if gathered together. Chemo has every chance of killing the rest of it off, and we needed to focus on that positive.
The spleen was gone. Appendix was basically just a big tumor, so it was gone. Giant ovaries, uterus, fallopian tubes, a couple chunks of the bowels, lots of lymph nodes. The list seemed to go on and on. But the overall message from Dr. Bakkum was that everything had gone better than normal, and she was very pleased with the surgery. Karen would be coming up to the ICU soon, still intubated and with a couple of drains in her abdomen to take off fluid that would build up, which is normal.
When Karen finally arrived at her room, all assembled were able to say goodnights and head for other beds. I wanted to stay, and Ann the nurse let me pull a chair up next to Karen and sit with her. I didn't realize just how exhausted I was, but every time I closed my eyes thinking I would fall right to sleep, a bell would softly ding, or the infernal ventilator hooked to her breathing tube would ping, and I just couldn't keep my eyes closed.
I had expected her to stay asleep through the night. But around 1 am, she gave a slight nod to some of the questions that Ann would ask. At one point she even gave my hand a little squeeze and rubbed my thumb with her finger, which made me burst with joy.
But the real surprise came just after 3 am. I was holding her hand when she slowly removed hers from my grasp and started making funny signs with it. Was she stretching her fingers? In my tired state I didn't initially understand. Then it finally hit me like an electric shock. She was using sign language!
H - O - T
Hot? Are you hot? I asked her.
She signed yes.
I uncovered her a bit.
H - U - R - T
Where?
S - P - L - E - E - N
I went to get the nurse. Ann was in another room, so I grabbed the nearest one and brought them in to see my amazing wife. I told him that she had told me that she was hot and was having left sided pain. He looked at me a little skeptically, as he knew that she had a tube in her throat and could not have told me anything verbally.
When we went into the room, I showed him how she 'told' me, and they started having a conversation with me translating.
Unfortunately, Karen was signing faster than my tired brain could keep up with, but I did my best as they talked about urine output, lab values, surgery details, and pain management.
We told her everything except the change in stage status, as she needed to focus on waking up enough to get the tube out of her throat.
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It's the end of December now.I'm a little sad that I didn't continue this story, as so many things have happened since August that I can't remember them all.
Chemo is ongoing and has had more twists and turns than I can count. Karen has been amazing through it all, but her health has taken a major hit and all of this has been brutal on her. We've still got a long road to travel and I've fallen behind on everything. So blogging is low on my list. But I'll try to figure out some way to get my head above water enough to get back to some sort of balance.
More Later
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