(Let me preface this by saying I NEVER have said "I need to go to the ER" in my life. I've been to the hospital 2x. One for each birth...that is it!
The week before spring break I had had my annual physical and everything looked good. I was told to keep doing what I am doing.There was nothing for me to do differently. (Plus I had been doing P90X and was in pretty good shape physically).
It was Tuesday evening and my back began to ache. By Wednesday, I felt horrible, and was in bed all day. By the wee hours of Thursday morning I was having trouble breathing and debated if it was worth it to wake my husband, load up the kids, where can I drop them off at 3 in the morning, and head to the ER. If you are a parent, you know exactly what I am talking about. So I waited and waited. With each struggled breath I watched the clock.
So early Thursday morning I waited long enough and woke everyone. We made a family trip to the emergency clinic. They did x-rays, which the kids enjoyed seeing, handed some prescriptions for pneumonia and was on my way.
By the following Thursday I felt better, but still had trouble breathing. Back to the emergency clinic. This time they did a CTscan. "Something" was there. They gave me more meds in case it was still pneumonia and told me to follow up with a pulmonologist in a week or two. I didn't wait. By Tuesday, I had an appointment with a pulmonologist and had many breathing tests done.
During my first pulmonologist appointment, the doctor amazingly enough had the wisdom to tell me that he thinks I may possibly have a carcinoid. Which he then pulled up Google to show me some pictures of it. Sadly, I had to help him navigate Google images. My thought was can he really be sure of this when I had to help him with the internet??
After that appointment I quickly went online and searched carcinoid. The word cancer came right after carcinoid. WHAT??? This was not like anything on TV. No one sat me down and said, "Sarah you have cancer." Nope!! I looked online and read and read until I freaked myself out. (Yes, I know, you should never google your medical problems).
So Thursday (3 weeks after my initial pneumonia doctor visit). I was in the hospital for an "out patient" procedure. An endoscopy - camera shoved through your nose and into the lung for a biospy.
Results- I had an carcinoid tumor of the lung. The tumor had collapsed a potion of my lung which caused the original pneumonia and trouble breathing..
Carcinoid Tumors- These are not very common, especially in the lung. Carcinoid tumors of the lung make up 1-2% of all lung cancers (1,000-1,200 cases a year are diagnosed.) I was not a smoker, no family history, and was baffled. Doctors have no idea what the cause of them may be. They also only are found due to other health problems. Mine was the pneumonia. I have never been so happy to have pneumonia...my blessing in disguise.
I had a PET Scan done. They injected me with some kind of radioactive stuff to see if there was cancer anywhere else in the body. I was lucky. No signs of any cancer anywhere else.
I found a surgeon and went in for removal. The best course of action, because this is such a slow growing cancer, is to go in and remove it. I had 40 % of my lower right lung removed along with some lymph nodes. I spent 1 day in ICU and another 5 days of very painful recovery in the hospital. Easter Sunday I was released to go home. With 2 small kids at home, I instead went home to my parents for a few more days of recovery. Smart choice for me.
My hospital stay was overall a very good experience. I had such wonderful nurses (minus one) who took such good care of me. They prayed with me and they were such a blessing. Maybe it was because it was Holy Week, but for whatever reason I never felt such a closeness with other Christians who were not afraid to talk about God. I joked I was spiritually covered. I was in a Methodist hospital being visited by 3 Baptist ministers and 2 Lutheran pastors. It felt like the beginning of some bad joke...A baptist, a lutheran and a methodist walk into a bar...
I remember almost everything from about the hospital. I remember the nurse in ICU who took care of me and most of the details from those 6 days. Unfortunately, the recovery months at home are a blur.
If anyone reading this has been diagnosed with carcinoid cancer, I don't want to scare you, but recovery is NOT fun. Every little move hurt. I have a 4 inch incision on my back close to under my arm and another spot lower from the drainage tube. I was very sore from the incision and also my ribs from being spread during surgery. (FYI- a good chiropractor is what made a world of difference for me and recovery. Once those ribs were be in place I was off the pain meds for good! It felt like a miracle).
Recovery was very slow. I was never so happy to hit 4 weeks then 6 weeks. Small milestones were wonderful. Being able to use my arm to brush my hair, sit up in bed, lay down, roll over, are all major accomplishments. I remember actually laying face down on my bed at home and thinking look what I can finally do. Then sheer panic set in. There was no way to get back up. I had to call the hubby for help. Going #2, sneezing, yawning, coughing are scary! Also you can not lift anything. Gallon of milk...don't even think about it. I did not do laundry, dishes, or pretty much anything for a month. The bright side is I lost another 6-7 lbs since the surgery. People always tell me I look good. I tell them it is "the cancer and hospital diet, I don't suggest you try it!" Hey, I may have lost part of my lung, but not my sense of humor. One bad side is I have lost all muscle tone and flexibility. Since I couldn't lift or do much my muscles turned to jello.
It is now 2 months since my surgery. I am doing well. I still get very tired, my back and side ache each late afternoon, I can almost lay on that incision side for 15 mins. When sitting still for long periods (movies & long car rides) I will have trouble breathing. I have to take a few big painful breaths, but then it will be better.
I'm happy to report that after MANY more tests (which included another round of injections and scans called an octriotide scan - done in nuclear medicine part of a hospital) and many oncologists. Let me point out that visiting cancer centers are quite the humbling experience! Results show that ALL of the tumor and cancer cells had been removed. I did have one lymph node that was effected, but that was also removed. The plan of action now is to have CTscans every 6 months, 9, mo, year, etc and also some special blood and urine tests every 6 mo that can tell if the tumor is your body. Who knew pee could do that!?!? NO radiation or chemo is needed!! Praise the Lord! Because one doctor mentioned the word "port" and I about panicked!
So there is hope. When I first googled carcinoid tumors I went right away to life expectancy. It was NOT good. But those results are based on older people. I'm a 36 year old female, non smoker, and in pretty decent shape (Though, I only run when being chased by dangerous animals). :)
But through it all, it was the support of my family and belief in God that got me through. People always pointed out that "you are handling this so well". Yes, I had 2 choices: to sit and stew and freak out about it since I'm the mom of 2 young kids OR turn it all over to God. I chose God. Once I did, I had the best feeling of peace and relief. I'm not normally one of those mushy God people, but this cancer made a huge difference in my life and my relationship with God. Once I turned it to Him I just knew "God's got this". That was my motto through the whole thing. I knew He had me in His hands and I was going to be ok.
Update-It has now been almost a year since the carcinoid discovery. I found a wonderful support group on facebook "lovable lunganoids". Since this cancer is so rare, I've been able to visit with other lung carcinoid patients and ask questions.
So far, my 6 month tests all came back normal. I still get anxious thinking about my 1 year tests and hitting that one year mark, but I praise the Lord each day the blessings He has given me. Once again, I know that no matter what, God's got me in His hands!
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