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Mar 6, 2017
Welcome to Dougie's CaringBridge website. As Doug's favorite sister, author of this website and his power of attorney, I have been given complete and total permission by Dougie to share his story here as well as sell off any of his assets if he steps out of line. Our family will use this website to tell Dougie's story of his journey of living with stage 4 small-cell lung cancer. This is a good place for us to keep everyone updated all in one place, and where you can offer any support or encouragement along the way.
How it all started: Right around Thanksgiving, Doug came home from a friend's house after a big meal, and complained of stomach pain and nausea, which he thought was from eating some whole cloves from the ham. Typical Dougie move. Pretty much from that day on, every day he was in pain/nausea, couldn't eat, and spent most of his time in bed. One day he decided to go to a walk-in clinic to get some relief, and was diagnosed as having ulcers. We would come to know this was a misdiagnosis. If only it had been ulcers! Also it was right before this happened that Doug had decided to quit smoking due to a chronic cough and wheezing, plus he had a friend who had a myriad of serious health problems from smoking, and Doug was ready to say, I'm done, I want to get healthy again.
The next month or so he continued to suffer--none of the medicine helped nor did drinking Kefir--and it got worse as he was also having breathing difficulty, so he returned to the clinic and they sent him to a gastro surgeon. After listening to his lungs with the stethoscope, the gastro doc became alarmed at the fact that one of his lungs was practically non functioning. She couldn't do a scope of his stomach or a colonoscopy because of the more urgent problem of his lungs, so she ordered CT scans that day and found "infiltrates" on his lungs and enlarged lymph nodes in his chest. She never said the word "cancer" ... I guess because she was not Doug's primary care physician. We knew the situation was urgent though. She told us Doug needed to find a primary care doc right away.
So that is what I set out to do, not knowing any better and just following her instructions . Looking back, I wish I had just made Doug go to the ER but for various reasons didn't, including Doug's stubbornness about not wanting to go to the ER and perhaps we were all in denial, too. As I tried unsuccessfully to find a family physician who would take a new patient who was uninsured, Doug's suffering finally got to the point where he basically gave in, saying, "Eff it, take me to the ER." So I did! They did some scans and told him that his issues could not be helped by admitting him; he needed to see an oncologist right away, and they got him an appointment the following morning, fortunately, at the same place Doug received treatment for his non-Hodgkins lymphoma back in 2007.
At this point we all felt the urgency growing of getting his some care. The poor guy had been suffering for over two months--not eating (he lost 60 pounds by this time), not sleeping, in pain, etc--and we couldn't do anything to help him. So we were so relieved to be seeing the oncologist. Even this though would take more precious time to get Doug treatment ... we faced several delays and challenges having to do with his not being insured (Medicaid pending) and other what seemed like randomly evil setbacks. It seemed we would never get him some help to feel better. Mom and I felt bad watching him suffer with no medical care yet.
Finally the scans and biopsy were completed and we got delivered the diagnosis on Friday, Feb 10: Stage 4 small cell lung cancer. It had spread beyond his lungs to his liver and lymph nodes. It was a very aggressive, fast growing cancer. The doctor described it this way: "You turn around for a minute, it's growing. It's that fast." The news was delivered abruptly, without compassion, and hurriedly. Without chemo, he would have 4 to 6 weeks to live. If he chose to do chemo, they could extend his life to maybe 6 to 8 months. What did Doug want to do?
Doug without question chose to do chemo.
On the drive home from the doc, we all were kind of stunned and maybe it didn't sink in fully. All of us and mostly Doug probably expected it to be a return of the old cancer, which it was not. This was different. So we had trouble processing this news. Doug's mind keeps going back to the last time, where he just does what it takes to cure it. But this time they said it's not curable. Doug has had a hard time wrapping his mind around this prognosis. Still does. And he wondered what it would be like to choose no chemo...what would that suffering be like? The thought of doing chemo for him was much worse than the actual cancer or prospect of dying.
But he had his thoughts on what he wanted to live for, and he thought about Liam, his great-nephew, just a young tyke of almost 2 years old (this July). Liam and Uncle Chunky have a special bond, and Liam is what made Doug say yes to chemo and yes to life. Other reasons were in his mind too... his beloved niece Kaley's wedding in July, a Cubbie's baseball game, fishing with his friends, a trip to Colorado to see our cousins. Lots of reasons to live!
This was Friday. The plan was,we would start the chemo treatment on Monday the next week (although even that became delayed due to him not having Medicaid yet).
Well, we didn't have much time between the diagnosis and what happened next: another trip to the ER that night at 130 a.m. Doug felt so horrible he called to me from the living room and I'm lucky I was still awake and heard him. He was in unbearable pain and having trouble breathing. I woke Mom up to tell her I was taking Doug in. We got to ER fast and they hooked him up to oxygen. He was not doing well with the breathing tests so they decided to admit him right then. After we got up to his regular hospital room, he got stricken with pain and unable to breathe and the attending doc pulled me aside and said, If we have to resuscitate him, his heart will not be able to handle it.... it would kill him, what do you want us to do, resuscitate or not? I was panicky, and was like, what??? That's not really a choice. The doc said basically that the cancer was so spread throughout his body that it was pressing down on all his organs and it was blocking his airway. I said well he needs chemo! This doc was like well, I don't know if that's going to help, or something like that, but I did somehow know that Doug needed chemo asap. This is when I started texting everyone to get here to the hospital. I thought Doug might not make it past today.
Recall that Doug had only been diagnosed that morning and this was not Doug's oncologist, so thedoc called Doug's oncologist and that doc gave the order to do emergency chemo. Doug was taken to ICU where he was intubated as he was unable to breathe. His lung had collapsed due to a tumor pressing on his lung.
I had been up all night with Doug in the ER and then in the hospital room, and had, without wanting to, fallen asleep in the morning time while doctors were coming in and out, and missing what they said, and woke up around 930. Family started getting here and we all got to visit Doug in the ICU while he had the breathing tube down his throat. He spent 7 days in ICU, the first four or five with the tube in. He was sedated but awake the whole time, able to communicate with us by scrawling notes. First with his left hand (because his right hand was strapped down to keep him from pulling the tube out). He was amazingly skillful with his left hand writing, and wrote all kinds of ridiculously funny, sweet, deep, weird messages to all of us--we partially blame the sedation but the rest was pure Dougie humor. He flirted with all the cute nurses too.
The emergency chemo had done the trick... it shrunk that tumor enough that his airway was now opened up again and he could breathe on his own. So they moved him out of ICU and into a regular hospital room for the next week and a half while he recovered and was fed all kind of meds via IV and monitored. He got pneumonia and a blood infection while in there so they had to treat that too. His immune system was at rock bottom and we all had to wear masks and be careful around him. They had him on a neutropenic diet, which didn't allow him to eat fresh produce due to potential bacteria. We had some ups and down trying to manage his pain and nausea, but finally they declared him ready to come home on Feb 28.
So that's where we are now..... Dougie is home with us and we are on a journey with him to live. Is the cancer still there? Maybe, probably. The chemo he is being given is to treat his symptoms--not meant to cure him--but to allow him to feel better and live some life. At the same time, Doug is a believer in Jesus and has 100 percent trust that God is holding him and whatever is His will, Doug has peace about it. We are praying for healing because everything is possible for those who believe. No one knows what will happen and we choose to believe for that. One way or the other, Doug's already on the winning team.