Know and Trust Your Cancer Team

Over the weekend I had to go to the emergency room twice. Yes! Twice!ย  Hold on to your hats because it gets wild. First, you should know, I struggled with the title of this blog post. So much had happened and I was having a hard time summing it up in a single title but, “Know and Trust Your Cancer Team” seems perfect now! Also, I am posting this story because of all of those Facebook friends and bloggers who have posted their stories and and saved me from making a bad mistake. I have read too many posts about people who regretted decisions made in the emergency room only to regret them later. I can only say, thank you for sharing your story and I share my story in their honor. Maybe,ย my story will help someone else make the best decision that they can at a time when it counts the most.

This Has Happened Before And It Will Happen Again

I love sci-fi and whenever I watch a time travel movie, that always seems to be the theme. Any how, here’s my story of what happened over the weekend. Since I am stage 4, my cancer is all throughout my body. Unfortunately one of those places is my rectum. When I was first diagnosed, they wanted to remove it and give me a colostomy. Fortunately, I sought more than one opinion and my oncologist at Duke told me that this was not a recommended move at the time because of my late stage cancer and that most of my issues could be managed with medication such as laxatives and stool softeners. He is very concerned with my quality of life.

As you have read before, my bowels swing back and forth between constipation and diarrhea. I wrote about that and the advice Dr. Liu gave me in a previous post. You can read that postย here. Between the advice of Dr. Liu and my oncologist at Duke, I have been able to deal with this problem most of the time but, not always. There are times, and I cannot explain why, that my bowels become blocked. No matter what I do, I cannot resolve the situation. Before this episode, the longest this lasted was 3 days but hey…. I’m always the one to push the envelope so we hit 5 days. After 4, I went to the E.R. and was hopeful they would resolve this for me. You see in the past, when I went to Duke, they simply gave me an enema with the medicines they use before a colonoscopy and within an hour or two I was on my way home with a pain killer and a warm blanket. Yes, they gave me a warm blanket. Well, this time I went to a different hospital near my home. I won’t name names but their initials rhyme with YOU-EN-SEE.

The Ambulance Ride

I was in enough agony that the pain pills weren’t helping and Lisa had to send David out of the house so he wasn’t present to see his Dad in so much pain. Thank you Lisa! I love you and your wisdom under pressure. ๐Ÿ™‚ย  The ambulance pulled up, they gave David a ride to the front door and off I went. Thank you mystery ambulance guy! Thank you for distracting my son! All he could talk about was his ambulance ride. He asked what kind of cancer I had. I tried and tried to explain it to him and then they gave me some sort of pain killer and it was enough that I didn’t care any longer if he thought I had colon cancer. ๐Ÿ˜€ย  I had some relief and maybe the next patient will raise his awareness about neuroendocrine cancer also known as Net Cancer. BTW, Net Cancer awareness day is Nov. 10th ๐Ÿ™‚

๐Ÿ™‚ Feel free to share this ๐Ÿ™‚

Hospital Number One

So after a short trip, I end up in the E.R. of UNC. The physicians assistant asks me what’s going on and Lisa starts explaining to him our situation. He stops her and asks, “Is there a reason he can’t speak for himself?” and I missed the joke of the century thanks to the BLASTED pain killers! I would’ve said, “I’ve been wondering that for 30 years”….but I didn’t…. I just blinked slow. ๐Ÿ˜›ย  Hee! Hee!ย  OK, moving forward. ๐Ÿ™‚ย  We unwind the 4 day saga (yes, it’s 4 days at this point) and after our long winded explanation I can tell he’s not listening at all. He interrupts frequently and seems very distracted. “Fair enough”, I think, “it’s the emergency room”.ย Still,ย  it’s a fairly new hospital and clean to boot so I have high hopes of resolving this quickly like it was resolved previously at Duke. He tells us that I will need to get a scan and then we can move forward with a treatment plan.

๐Ÿ˜› Speaking of scans, feel free to share this to raise awareness ๐Ÿ˜›

While I am waiting I can honestly say that they managed my pain well. I am wheeled away to get scanned and returned to my room. Eventually, he returns and wants to recap my treatment history. To be honest, I’m a bit annoyed because we already told him all of this. If he had only been patient he wouldn’t be asking all of this again BUT, OK, I recap again. Of course, I don’t show my annoyance. He mixes everything up as I am explaining it to him and he is still interrupting. In fact, sadly, he cannot seem to keep one detail in his head….not one. Finally, he says something about my previous visits to the hospital and, as a ploy to get him to focus, I ask him to pull it up in my records and verify it. I need this guy to focus and maybe some hard copy records will work!ย  It did….kinda.

So, he returns and tells me that they want to do surgery but he is very ambiguous about which kind. I know what he’s suggesting even though he’s trying not to say it in a way that I will understand. I can tell that Lisa doesn’t understand based on the questions she’s asking. I explain again that my cancer team’s plan is to treat with medicine and not surgery. He says that they will not do that. I’m shocked. I ask why and he tells me that they are afraid that they will puncture the tumor. I explain to him that this is how I am always treated at Duke. He says that the doctors will not do it. :O So, he decides toย  increase the pressure on us. I can tell Lisa is worried. Now, until this point I was a bit frustrated with him but not angry. Now, I’m starting to get upset. He starts painting a picture of the “horror” that awaits me if I go home and that I might even die.ย YES, he told me that I might die!!!ย  Talk about a hard sell. I find out during this “discussion” that the surgeon made this decision over the phone WITHOUT seeing my scanned images. :Oย  ย He asks me bluntly, “If I am refusing surgery 100%?” and I say that, “I am 100% refusing surgery”.ย Now, I think he is shocked.

I can hear my cancer team’s words echoing in my head. I KNOW that unless my body has changed drastically in the last few weeks that he is wrong, the radiologist is wrong and the surgeon is wrong. He finally orders a stool softener and I immediately start passing fecal matter. He looks surprised and hands me a bottle of Magnesium Citrate Oral Solution to take home. I am told it costs about $2.00 in the pharmacy. He gives me a pain killer and I leave for home. Looking back, I think his lack of attention and focus was because he already had his “mission” because let me tell you, he was selling it hard!!! Yeah, know and trust your cancer team is a good title!

Hospital Number Two

I get home and believe it or not, I fall asleep until the next morning. I wake up and I am in no pain at all. I cannot explain that but believe me, I am thankful. Lisa and I both decide that it still makes sense to go to the E.R. at Duke in Raleigh but, before I do, I take my bottle of magnesium citrate and I page my oncologist. It’s Sunday morning and barely 6 am when he returns my call. He hears my story and is a bit shocked, angry and tells me to head over to Duke where they don’t make major decisions like that in the E.R. without consulting a board of doctors including himself.

This time, we did not call the ambulance we drove to the E.R. and I will tell you, I might regret that now. I sat there for quite awhile AND when I used the bathroom they called my name and skipped me because I was not immediately available! It was squeaky wheel time! Lisa is better at that than I am. ๐Ÿ™‚

Now, before we get started I need to say one more thing. The waiting room was filthy! Filthy! The bathrooms were literally unsanitary and cigarette butts were all over the floor. Worse yet, the room in the E.R. was dirty. It was not nearly as bad as the bathroom but itย was very disappointing. Here’s just one picture. I have others. ๐Ÿ™

I know the rooms are much older and take more punishment but, I would expect more from them since they are world renowned. I will say that the bedding was clean, the instruments were clean, the toilet in the room was clean so, maybe I’m being too critical? I’m just glad David didn’t have to go to the bathroom there.

Well, moving on, the aides and nurses show up to take my vitals and find out what’s wrong with me. They are all very pleasant and, to be fair, so were the people at UNC for the most part. Here’s the thing…they ALL paid attention and I never had to repeat myself unless a different person asked the question again. The waiting time was long but, thanks to the magnesium citrate I am already going to the bathroom!ย  So much for surgery!

People are moving in and out of my room and finally the doctor arrives. He’s a young’n ๐Ÿ˜€ I know most people have trouble with young doctors but I really don’t. They’re usually very open minded and tend to be more “cutting edge” (pardon the pun) than older doctors. He gets my story, examines me and tells me to be patient and that he needs to consult the other doctors and that he will be calling my doctor on the phone. We did wait a long time but eventually another doctor comes in and explains that he’s running the show and since the situation is already resolving itself he is going to get my discharge papers going. He and the other doctor restate that they would simply have given me an enema to get things “going again” and that surgery was not needed.ย  Know and trust your cancer team. Yup, that’s a good title for this blog post. ๐Ÿ˜€

In retrospect, I must say that I will not go to the UNC E.R. ever again and that I feel much safer going to the Duke E.R.ย  It was dirtier and we had to wait longer but, the medical decision was much more sound and it was not made in haste.ย  I just hope that maybe, just maybe, this blog post will help somebody else make the best decision for themselves be it surgery or no surgery.

๐Ÿ˜€ Oh, did I mention that Nov. 10th is Net Cancer Awareness day? ๐Ÿ˜€

Keep fighting and be strong,
Ed

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4 Comments

  1. Ed enjoyed your blog. I read it while in the ER today ironically. Keep the faith and fight the fight! I too go back and forth between constipation and diarrhea. It is a struggle to get medical teams to listen. I will use your medical teams advise as it makes sense. Praying for you!

    • It is difficult to get them to listen. I’m not sure my doctor’s advice applies to you but, if it does, then I’m happy that I helped. I hope you have your own doctors to rely on. To be honest, that’s probably a better move if you have a doctor you trust. It took me quite awhile to get a group of doctors that I trust.

  2. Dear Ed, You are doing great. I really admire the way you are handling each new surprise with this disease. I know it gets tiring. I wish I could make it easier for you and your family. I think your faith is a good thing and may make life easier for Lisa and David in times to come. I have very mixed feelings about what is the best way to move forward. I guess you just keep making the best lemonaid you can. Love as much as you can and hold each other close as long as you can. Suffering sucks big time. Like with the elections. It ain’t over till they count all the votes…Lily

    • You know, I think you are right. You just have to make the best lemonade that you can! I agree 100%!! Faith does help me. ๐Ÿ™‚ If you think about it, if you believe that God loves you then trusting God is not a mistake. ๐Ÿ™‚ It also takes the pressure off. I do my best to make the right decision but, in the end, God has control and God loves us, right?! ๐Ÿ™‚ My Facebook friends help too. There’s lots of people on there who are going through the same thing. It helps with making decisions and just having friends to talk to. ๐Ÿ™‚ When were you diagnosed?

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