This week there were three days that were the hardest days I've ever had so far in my life. They even trump the three days I was in the hospital in labor with Kez (I was admitted on a Thursday and didn't deliver until Saturday). We almost lost our dear daddy and husband to septic shock.
Keith, his dad, was taking a turn to stay with Marshall at the hospital one night. Marshall had finished a round of chemo and was waiting for his counts to recover and was completely neutropenic. When I am away from Marshall at the hospital I am not able to sleep well. That night I just finished watching Gravity and Marshall wanted to play a game of Ticket to Ride. That is one way we have to connect on our phones when we are apart and to help the time in the hospital seem to go faster.
We had finished our game around 12:30 am. At 3:16 am Marshall texted me saying he woke up with joint pain and a fever. I woke up right away and texted that I hoped it was a neutropenic fever (sometimes when you have no neutrophils, you get a fever). I asked him if Keith was asleep or if he knew what was going on and he said Keith knew. He proceeded to text about chest x-rays and antibiotics. I fell back asleep and at 5:27 I woke up out of nowhere and texted him to ask if he was able to get back to sleep. He did not respond so I went back to sleep thinking that's what he'd done. Fifteen minutes later my door opened abruptly by Lucile saying "Get up we are going to the hospital. Keith called and they are taking Marshall to the ICU because his blood pressure dropped". I was surprised with how calm I was for the drive, but I do remember saying, "I hate cancer!"
I kept texting and calling Marshall with no response so I knew something was really, really wrong.
When we got to the ICU Marshall was having an "episode". An episode where his whole face and neck were bright red, his blood pressure was critically low, and he was writhing in pain. He said it felt like bursting pressure in his face and neck. It was extremely scary. He was already on 2 vaso pressers (blood pressure meds) and right away they had me as his agent sign some consent forms for a central line, an arterial line, and a ventilator. A doctor came in making sure that Marshall wanted to be resuscitated if he lost consciousness.
Keith and Lucile (Marshall's parents) were there and we were all rushed out to the family waiting room while they did the procedure. When we were finally able to come back in Marshall had a large cable with many protruding lines out his neck. It surprised me because they told me it would go in his chest. The doctor explained they placed it there because it makes it easier to access his vital organs. He was also in the middle of another "episode" explained above and they were unable to give him pain medications because they would lower his blood pressure even more.
They quickly pulled the picc line out of his arm in case that was the source of infection. The rest of the day and into the night his blood pressure was terribly low. I was tense all over. Not as tense as he was. I hadn't eaten and when Keith got us some Jimmy Johns sandwiches in the afternoon I admit it tasted like cardboard, but I ate it knowing I needed to take care of myself so I'm not a bigger burden to the situation at hand. A very kind member of the church came to help Keith administer a blessing to his son. The blessing was promising and for the first time that day I remember having some feeling come back to my body and crying. Up to that point I had been numb without realizing it. Lucile went to take Keith home and said she'd be back.
Marshall asked if his wife was in the room. I assured him I was and kept rubbing his feet so he'd
know I was there and trying to help ease his pain in any way. He requested that I go over his advanced directive with his mother and when she came back we read through the document and his end of life decisions with more tears. I studied end of life decisions thoroughly when I was a teachers aid for bioethics in college yet I admitted to my mother in law that it was different with my own husband. My emotions were raw and I knew that my emotions would play a huge part in making a critical decision at that point. Marshall has chosen me as his agent. Probably due to the fact that I am well educated in this field, but at that moment I understood why someone would back down from that position. The pressure of being an advocate for someone I have known for almost six years and three of those we have been fighting cancer was overwhelming. I didn't want Marshall's family to blame me or hate me if they disagreed on a medical intervention. Lucile assured me that they would support me and discuss the critical decisions if needed.
The night calmed with Marshall's episodes also calming. That reassured the doctors that it probably
was the picc line that caused the infection. Lucile and I both attempted to sleep in that tiny room sharing the one pull out chair. I was not so successful because I kept popping up to look at the monitors with every beep.
The morning brought results of gram negative rods growing in Marshall's blood cultures. For those science nerds like me, detailed speciation would later show the specific bacteria as enterobacter. These bacteria are "pathogenic and cause opportunistic infections in immunocompromised and usually hospitalized patients". It's generally caused by some form of mechanical site and in Marshall's case, they believe it was from his picc line. The lab is still growing his bacteria to see which specific antibiotic is killing it most effectively. I think it's awesome they can do that!
They had to pump liters and liters of fluid through Marshall's system in order to keep him alive while his blood pressure was so low. There is still fluid in his lungs. He is working through that with oxygen, lasix, and a spirometer. The bacteria causes the blood from the heart to shoot through the body system extremely fast so the cells and vital organs do not receive the oxygen and nutrients they need. For two days Marshall's limbs felt cold and clammy. The doctor explained that the body tries to compensate for this loss of blood flow by sending what it can to his vital organs so the legs and arms don't get as much blood flow. His kidney and liver numbers were getting higher and higher. If his blood pressure would have stayed down for much longer, there could be irreversible damage to these vital organs. His numbers are looking better each day but his liver levels are still higher than they should be. We are all hoping these levels continue to improve.
Now you may understand why Marshall feels and looks like he's been "run over by a truck" as Lucile says. I really, really appreciated when the director of the ICU himself came in early one morning to tell me, "Your husband is going to be ok. He is turning around." He also expressed his hopes for Marshall doing the CART-19 trial. As badly as I don't ever want to be back in that ICU again it is very possible after Marshall receives his re-engineered T-cells.
Marshall wrote a song called Ten Days last year when we had to avoid each other completely during his treatment because we were both ill simultaneously. While he was going through his ordeal in the MICU (medical intensive care unit), our communication was nearly non-existent and when he finally did try to talk it was very hard to understand him due to his paralyzed face and lack of oxygen. Here is a little play-off the lyrics of that song regarding this week's experience for me:
I went three days without you, and I nearly lost my mind.
I watched your every heartbeat even when you closed your eyes.
I went three days without my command. I went three days without my husband.
I went three days in a dark and lonesome ICU, and then you stabilized and then you spoke.
And you survived.
I went three days without you and I pleaded with others to pray.
Your name was in the temple at least a thousand times that day.
I went three days without your humor, I went three days without my animator.
I went three days in a dark and lonesome ICU and now you're recovering and now you stand.
And you survived.
When he finally was more aware of his surroundings, I had to get out of there! I had to see my son I hadn't seen for 3 days. I'm grateful Lucile was there so I could do that. There have been some moments as Marshall has fought this awful disease these last few years where that has not even been an option for me. I wondered if Marshall would even know I had been there for all that time because in the past when he has been out of it and I have been there he has come around and asked, "Where were you!?" I've had to explain I was there through the really rough moments but you just didn't know it.
This experience has helped me understand Our Savior a little better and reminds me of the poem "Footprints in the Sand". I know Marshall and our family are being carried by your prayers, packages, temple time, phone calls, texts, and any efforts to support and help bear this heavy load. There's another significance to this poem as well. When Marshall and I were dating, I remember on one particular date as we were contemplating being married for eternity in the temple that we were discussing what we want in our eternities together and what we want to create together. I said I wanted "sparkling silver sands" and he wanted "golden oceans". I know even if he hadn't pulled through this one that we would still have that opportunity to create our perfect beach in the eternities since we are sealed in the temple.
Special congratulations to my parents who are celebrating 35 years together today! So sorry that mom is here with me dad. I couldn't imagine getting through this last week without her here to help with Kez at any moment. "There will be nothing in this world that can defeat us" Thomas S. Monson. We could probably even create that sand and water now with the right materials and chemical reactions. Maybe even in about 3 days :)
