It's a phone call you are overly anxious to get and yet don't want to answer the phone when it comes. Some of life's greatest challenges fall into that category. None more so than the call that tells you once and for all the medical problems you have been experiencing the past 5 months is Cancer. It's not some obscure tape worm. It's not food poisoning. It's not gall stones. And it's not just getting old and not being able to eat the things you like. It's the big C. Cancer. A six letter word that is scarier than any other in the English language.
Let me give you some background. In October I was just having a normal day hosting an open house for one of my clients. I sell real estate in my day job. I was feeling ok, but a bit bloated. Near the end of the open house I felt like I might vomit. About an hour later I did. Chalk it up to eating something bad or spoiled I thought. Nothing to be worried about. Then about a week later it happened again. Lingering flu? Not sure, but I felt pretty good after I vomited so no worries.
About 4 more occurrences made me think this may be something to talk with my doctor about. I did. He thought it might be food poisoning. He gave me some meds and off I went to heal. This seemed to help for a week or so and then it came back. This time more aggressive and now add diarrhea to the mix for things bothering me.
I went back to the doctor and he changed my meds. This helped, but didn't end the problems. The doctor called for more tests. A CT scan, more blood tests, ultra-sound, nothing came up with the solution.
The holidays were brutal. I went east to visit Washington DC and my sister in NYC. The trip was wonderful, however my stomach didn't want to be there. Nightly vomiting and diarrhea helped me realize I had a serious problem. Here I was 15 hours from home by car and all I could think about was getting back to my bed.
I got back home and went to see the doctor immediately. He referred me to a specialist in gastro intestinal medicine. An endoscope discovered a mass in my intestines. Biopsies of the mass determined it was Cancer. And as I write this entry I'm two days from meeting with the surgeon who will tell me the seriousness of that Cancer.
Dealing with the initial shock
I was in a meeting when I got the call. I heard the news from the doctor that he suspected I had Cancer, then walked back into the conference room for the meeting having an out of body experience. I knew people were there talking but what did I just hear. Oh my. I had to tell a few close friends and family. First a text to my sister. Test result...Cancer. Call when you can. She too was in meetings and a short while later she called. Nothing is harder. Tears, confusion, a feeling of hopelessness at first. Then encouraging words from my sister. "We will fight it, I'll be with you every step of the way..."
I heard this again and again as I told people. We will fight this. I'm with you. You don't even begin to appreciate how lucky you are to have such loyal friends and family members until you face something like this. Cancer unifies like little other. Maybe because we all know someone who fought and won and fought and lost this battle. It's personal.
We didn't know much. It was Cancer, but no insights into the severity of it or what stage it might be in. That information was to come with a meeting with a specialist. With that in mind, we decided not to tell many people. There were lots of questions to be answered, and my friends and family would wear me out asking them. So we decided to keep a tight lid on this until we knew more. Next step, meet with the specialist.
Meeting with the Cancer specialist.
Dr. Magesh Sundaram. That is who my meeting was with. A man who certainly was not in a hurry to "get to the point." We meet in his office in the Carle Breast Cancer Center. He tells me he is in charge of the Cancer center, certainly reassuring. For the next hour and a half I get a biology lesson on the digestive system. "The stomach empties the food into the small intestines where the fluids from the pancreas and liver complete the digestive process."
Now he turns on the video monitor and shows me slides from the CT scan from a few weeks ago along with the video from the endoscopy last week. Bottom line there is a tumor in the intestines just outside my stomach. The doctor who did the endoscopy biopsied the tumor along with the glands just outside the lining of the intestines. The tumor is cancerous, however the glands are not. This leads the doctor to speculate the cancer has not spread beyond the tumor. With that said, he says it is Stage 2 cancer. I ask him, "Doctor, one thing you are not saying is 'Get your affairs in order', does that mean you think you can get it all?" He says yes, we can beat this.
After two hours of meeting we have a game plan. I'll come in for surgery February 4, (originally the 11th, but he moved it up a week the next day). Surgery will be 6 to 7 hours. I'll be in the hospital for 7-10 days and then recovering at home for up to four weeks. Little did I know how many times I would be repeating this to friends and family in the next week. I could have printed business cards and handed them out ... surgery, recovery, .... etc etc. What I know first and foremost though, this is in God's hands. He has a plan. However this turns out, it will be his will.
Letting the world know
Who do you tell? When do you tell them? Who needs to know what? These are the hardest questions. I learn quickly one of the biggest problems telling people is that each time you talk about it you burn energy and emotion. Cancer is scary. We all know that. And the natural reaction is that you are going to die. Truth is we are all going to die. I could be hit by a car today and be gone tomorrow. Somehow when you tell folks you have Cancer it seems more immediate. Of course family is a priority. And closest friends as well. But then I begin to think about the different groups that I'm involved with; Rotary, Fraternity, Doggie Play Group, Church, Theater, Work etc etc.
I start making a list, calling relatives, friends and others. The hardest are my younger relatives. My Godson, nephews, nieces, etc. They ask hard questions. Two want to drop out of school and come take care of me. I assure them, I'm ok, and they should finish school. And some of the kids I have mentored in the area are tough to talk to. Again they don't begin to understand the differences in stages of Cancer. They just know it kills. I assure them, we are going to win this fight.
Just when I think "everyone knows" I remember I forgot to tell this person or that person. I truly am ready to be done explaining and move on to the next stage. It just takes a lot of energy to explain. Part of my duty in explaining is telling the facts, But part is also reassuring them I'll be ok. Different people react in different ways. I find "Cancer survivors" are optimists. On the other hand folks with horrific experiences immediately go the the worst scenario. I need to help each feel my optimism.
I am amazed though at how people react and respond. A few friends organize a meal train to make sure my sister, my Chinese student and I are fed during the month. Others make plans to take care of my dog while I'm in the hospital. And others plan a network to come sit with me and watch out for me. I have incredible friends and family. I truly thank God for them all.
One of my fraternity brothers sent a note out to a few hundred brothers. The texts, calls and letters warmed my heart. People I haven't seen in years reach out just to say hi and tell me they are praying for me. This happens with my fraternity brothers, and other friends as well. I have an entirely new appreciation for the power of prayer and church prayer lists. It's humbling to think about the hundreds of people who are praying for me who I have never met.
Next steps
Tomorrow as I write this section I have a Pet Scan, which should determine if the Cancer has spread along with a pre-op physical to make sure I"m healthy enough for the procedure. Then next week a meeting with the Doctor to review theses tests. Surgery is scheduled for February 4.
I'll fill this in more as I'm able.
Update 1/29/16
Talk about getting the wind knocked out of you. The doctor called today to say the Pet scan showed the cancer has spread to my liver. Although he didn't tell me how much it has spread or what the treatment is. We meet on Tuesday for the update. My family has not had good luck with liver cancer. So when we hear those two words together we cringe. Also there is another poll-up on my colon so that means I need to go in for another colonoscopy before the major surgery to get it removed.
I'm not thrilled by this news, an already busy week is even busier now. But I can't control what I can't control The worst part is I was really starting to think we were going to have this surgery and put this behind us. I am not so lucky.
2/1/16
The cavalry has arrived My sisters from NYC and Chicago showed up today to take charge. And I"m blessed they are here. I'm not sure what I would do it I didn't have help. I had several talks this weekend with friends who are doctors and friends who have faced Cancer. The theme, take it one day at a time. Don't anticipate the worst, plan for the best. Good advice.
Sunday was a teared filled goodbye at church. So many wonderful people who care. Trust me, I"m not saint. But I am blessed to have a church family who come together in times of need. God led me to Savoy Methodist Church and I'm glad he did.
Only 3 more solid meals. Then I will be drinking Steak and Shake shakes for a month! I wish. I imagine it will be some sort of feeding tube that by passes by stomach. I'll imagine I'm eating fine dining. Let's go with that :)
Only one more full day of work as well. And of course, that meeting with the doctor in the morning. One day at a time. Ok, I get it.
Today was an ok day. I don't feel great, I'm sure part of that is nerves and acid in my stomach. Ok, enough for one day. I'll try to update tomorrow.
2/2/16
Today will be the day I never forget. The Cancer has spread. Plan A, to remove the tumor is now off the table. Plan B, creating a bypass in my intestines, eat more regularly and get stronger is now on the table. I'll get healthy from this procedure and then tackle the newest enemy, Liver Cancer.
It's not good news. Untreated the doctor says I have 3 months. With treatment, chemotherapy, etc, he thinks we can prolong it to 18 months. Either way, have a target of "500 of so" days to live it not what I call a positive outcome.
So now we fight. This now is the time for us to research alternative medicine, specialists, etc. Suggestions are welcome. The thought goes through my mind, if there are only 18 months left, how should I spend that time. Something to ponder the next few days.
Good news is I won't be in the hospital as long, only about 5 days, and the home recovery will be shortened, maybe two weeks.
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One day at a time....
Yesterday was chemo session #4. It's amazing how simple it is. Go in, get comfortable, and they plug you in and fill you with meds. Before you know it you are back home. I always bring a movie and yesterday was "Oklahoma". The movie starts with "Oh what a beautiful morning" That was really true. Lab tests came back with even better results than two weeks ago. My scores are nearly normal for cancer detection and nutrition. All indicating the chemo is working and the surgery designed to help me eat/retain vitamins, is all good.
The past two weeks have been fun. I saw two musicals, Fiddler on the Rood with one of my former actors Timothy Purnell at Uni High in town and then A Funny Thing Happened on the way to the Forum with two more of my favorite actors, Ryan Gossett and Alec Campbell and all time favorite director Suzanne Aldridge at Centennial High School. Both shows were wonderful. I'm producing Oklahoma this summer and hope all will audition and be in the show.
No real issues with side effects. And I started lifting weights again, That's a milestone for sure.
I overbooked this weekend, working on a Habitat project with guys from my fraternity Saturday and then facilitating an I-Program for the UI Leadership Center on Sunday. Sunday after chemo is normally my "bad day" so hopefully I won't feel too tired. Oh well, bad planning on my part but I know it will be energizing. So hopefully it all balances out.
Many thanks to Jean Huddleston and Linda Finfrock for bringing meals this week. It's so helpful to have meals on chemo weeks as it's really hard for me to cook the day of and the next few days after chemo. My appetite is good but the smells really get to me.
My love to all who are supporting and praying for me! We are making progress.
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