The complete timeline of my battle with stupid cancer.
Sept 2009 – Bad acid reflux and trouble swallowing for two weeks. It was getting to the point where it would wake me up at night. Sought medical attention at Aurora Medical Center in Kenosha, Mike Jacobs, PA. Mike orders blood test.
Oct 18, 2009 – Blood test with suspicious results. My white cell count was high and red cell count low. CT scan ordered.
Oct 25, 2009 – CT scan shows abdominal mass. Mike Jacobs actually described it as “stomach inflamation” and said it could be anything, including a stomach infection. The person who read the CT scan must have known there was a big tumor there, but I guess they didn’t want to scare us until they knew what it was. Endoscopy ordered. I’m not really concerned at this point.
Nov 4, 2009 – Endoscopy performed by Dr. Lyndon Hernandez of GI Associates at Kenosha Medical Center. T3 tumor discovered at top of stomach, GE junction protruding into esophagus, biopsies taken. Biopsies show squamous cell atypical but do not confirm malignancy. This was the day we first heard the words “Basil” and “cancer” in the same sentence. This was the day everything changed. Dr. Hernandez was super nice and seemed really upset about tumor. I am officially terrified.
Nov 11, 2009 – Second endoscopy performed by Dr. Tedd Cain of GI Associates (who was kind of an asshole and had a horrible bedside manner) in Racine to take bigger biopsies. Biopsies show squamous cell atypical at the GE junction but no malignancy. We are told the case is very weird; squamous cells do not exist in the the stomach and are not supposed to be there. At this point, two endoscopies with biopsies have both been negative for cancer. We are holding out hope that maybe this isn’t cancer.
Nov 17, 2009 – GI Referral at Froedert in Milwaukee and GI Referral at Rush Medical in Chicago, IL.
Nov. 20, 2009 – Third endoscopy, this time with ultrasound and fine needle aspiration. This is a more thorough type of endoscopy where bigger samples are taken. Performed at Froedert by Dr. Abdul Khan. Biopsies reveal squamous cell carcinoma. So it is cancer after all. Laparoscopic procedure ordered. Consult with oncologist ordered. Plan for chemo -> radiation -> surgery, which is known as neoadjuvant therapy.
Nov 25, 2009 – CT/PET scan at Froedert. PET scan invloves drinking and being injected with contrast, which sticks to cancerous cells and “lights up.” PET shows a tumor about the size of an orange at the bottom of my esophagus and top of my stomach, a place known as the GE junction. There is a sphincter there that holds food in the stomach and doesn’t allow it come back up into the throat. The white spot around my junk is not cancer, that is contrast collecting in my bladder.
Dec 7, 2009 – Laparoscopic procedure and peritoneal wash performed by Dr. Edward Quebbeman at Froedert. “True cut” biopsies taken and are considered the “gold standard” of biopsies and large chucks of the tumor are taken out for inspection. True cut biopsies reveal squamous cell atypical but no malignancy.
Dec 9, 2009 – At this point Dr. Quebbmann at Freodert questions carcinoma diagnosis and refuses to perform chemo-radiation therapy. Recommends immediate full resection/partial resection of stomach and esophagus. Dr. Quebbmann’s nurse tells us that they don’t think it’s cancer. She says the true cut biopsy would have found cancer if there was any. Of the four biopsies taken, only one showed cancer, so we start holding out hope that maybe this is something else. I get a surgucal consult where they describe what they will do, and it sounds pretty barbaric. There is a good chance they will cut my entire stomach out and replace it with a piece of my colon. I am told I will be able to lead a normal life, but our googling tells us otherwise.
Dr Khan and his team at Freodert disagrees and says there is no doubt it is cancer and wonders why Dr. Quebbmann will not allow chemo. Dr. Kahn’s nurse tell us, “If it looks like a duck and quacks like a duck, it’s a duck.”
Dec 11, 2009 – Oncologist Dr. Malik Bandealy of Aurora in Kenosha recommends chemoraditaion therapy and wonders why Freodert has changed course. He agrees with Dr. Khan that this is cancer and goes back to the PET scan. He says that my tumor would not have lit up like it did on the scan if it wasn’t cancer. Strongly recommends against surgery first.
So now we have two recommendations at either end of the spectrum. Both doctors are highly regarded. Do we treat it like cancer or do we cut first and figure out what it is later?
Dec 11, 2009 – Head/brain MRI with contrast performed. No abnormalities found.
Dec. 18, 2009 – All records, pathology, tissue samples, reports sent to Mayo Clinic in Rochester for third opinion. Visit Mayo Clinic in person from Dec 21 – 24.
Dec 21, 2009 – Fourth endoscopy performed with ultrasound and fine needle aspiration at Mayo. Confirmation of squamous cell carcinoma. So I really do have cancer. After all the back and forth, I guess I was holding out some hope that maybe it wasn’t cancer, but now there is no doubt, and the full reality of the situation comes down on us.
There is some internal debate at Mayo about whether the mass started in the esophagus and traveled into the stomach, or the other way, but they label it esophageal cancer to give it a name. I am told it is Stage 3 and the odds of survival are about 25 to 30%, maybe a little better because I am so young.
Mayo concurs with Dr. Bandealy and recommends neoadjuvant therapy, but with a twist. Most people in my situation have two rounds of chemo paired with radiation, then have surgery, then get two more rounds of chemo on the backside just to be sure.
Our oncologist at Mayo, Dr. Steven Alberts, suggests a different approach. He cites a number of studies in Europe where people are treated with all four rounds of chemo and radiation before surgery. A growing amounnt of data points to this method being more effective in reducing the size and spread of tumors.
We return to Kenosha and Dr. Bandealy with our findings, and he agrees to try the new approach and give all four rounds of chemo first. I am excited to get started, although he does give me a bit of a warning; “You can only have four rounds of chemo, no more.” The concern is if they do surgery and have “dirty margins” in the tissue, I will not be able to kill it off with more chemo. I still want to try the Mayo approach, and he agrees to do it.
Christmas Eve day, 2009. Driving home from Mayo in an ice storm. Merry Christmas. You have cancer.
Dec 31, 2009– Mediport installed in right chest. The medi-port is a rubber-like pod inserted beneath the skin with a tube that goes directly into a main artery. This allows for chemo, drugs and fluids to be pumped into me, and for blood to be drawn. As much time as I spend getting poked, the medi-port is a no brainer and really helped with the whole process. After it heals, it doesn’t really bother me at all.
Later that night I watch the ball drop in Times Square still groggy from anesthesia, and wonder if this will be the last time I see it. Beth is sleeping on the couch next to me. I am now officially on leave from work. My employer was very supportive and told me to do whatever I needed to do. I receive my full salary for three months, then two thirds of my salary on short-term disability.
Jan 6, 2010 – Chemotherapy cycle one begins. Plan consists of four cyclces: One day IV infusion of Cisplatin and five days of 5-FU delivered continuously through a portable pump, the last two chemo cycles paired with 28 treatments of radiation. I literally have a pump hooked up to my port, giving me small, steady doses of chemo for five days straight. It makes a “phhhttt” sound with each squirt, about every two minutes. I have to sleep and try to clean myself with this pump on me at all times. It is the size of a paperback and I keep it in the pocket of my white fluffy robe. We are given a haz-mat kit in the event a tube breaks and chemo gets out. The shit is toxic, and I am hoping it buys me time.
Chemo kills fast growing cells, and damages all cells. Cancer is comprised of fast growing cells, which often makes chemo an effective treatment. Unfortunately, there are other fast growing cells in the body, including “wet” tissue in the mouth and throat, digestive system and hair follicles. The idea with chemo is essentially bring the patient to as close to death as possible without killing him.
After I was hooked up to the drip, I updated my Facebook status: “I love the smell of Cisplatin in the morning. It smells like victory.” Cisplatin and 5-FU would spend the next six months kicking my ass.
Jan 7, 2010 – ER visit for severe pain and nausea. CT scan completed. It felt like I had swallowed broken glass, and I was dry heaving. Beth found me on the floor of the bathroom and called my oncologist, who told her to get me to ER. It felt as if my insides were being shredded. I have never been in so much pain. I now believe the tumor was literally being ripped apart by the chemo.
There was a horrible blizzard that night and as Beth cleared the driveway the snow blower broke. Had to call John in the 4 x 4.
Within in days I am able to swallow normally and am able to start eating almost anything. The tumor is shrinking, I know it.
Jan 28, 2010 – Chemotherapy cycle two begins. Cycle one beat me down pretty good and I was sick most of the time. Just as I started feeling a little better, it was time for cycle two. We tried some new anti-nausea drugs and they were fairly effective.
Feb 2, 2010 – Radiation Oncology visit with Dr. Wong of Aurora in Kenosha, WI.
Feb 22, 2010 – Radiation begins and consists of 28 sessions until March 31. I am given tattoos and marked so they can accurately line up the beams of radiation.
March 1, 2010 – Chemotherapy cycle three begins with radiation concurrently.
March 16, 2010 – Surgical Consult scheduled with Dr Tracey Weigel in Madison at UW Hospital. Dr Weigel is world renown for her research in laparoscopic thoracic surgery techniques. She perfroms the type of surgery I need over 50 times per year and people from all over the country come to her.
She is somber and tells us she isn’t sure she can do the surgery. She must take a look at my insides when I’m done with radiation and chemo. We leave feeling a little morose.
March 29, 2010 – Chemotherapy cycle four begins with radiation concurrently. I am feeling pretty bad at this point. I can tell my tumor is shrinking because it is much easier to eat and my reflux is gone. I am gaining weight from a low of 149, but I am no longer working our and am losing muscle mass.
April 5, 2010 – Chemo and radiation finished. Rang the bell at Aurora. While I was pretty sick and run down for most of my treatments, it wasn’t as bad as other people I saw and heard about. I had nasuea early on which was eventually fixed with drugs. Besides that my biggest sympton was neuropathy, a tingling of the finger and toes, and pretty bad tinnitus, a high pitch ringing of the ears. I also had bad mouth sores during each round of chemo. I did not lose my hair.
May 17, 2010 – Laparoscopic exploratory procedure performed by Dr. Tracey Weigel at UW Hospital in Madison to see if I am a good canidate for surgery. She finds the stomach and esophagus to be “pristine” and see no signs of metastasis. She is very excited and recommends to go ahead with surgery.
June 14, 2010 – Surgery performed by Dr. Tracey Weigel to remove lower part of my esophagus and upper part of stomach and sew the rest together. The procedure involves cutting out the stomach portion by poking small hiles in my belly and doing it with cameras. For my esophagus, they go in through my side and purposely collapse my lung to make room. The doctor tells me this surgery is much more complicated than a heart transplant, and takes much longer to heal.
The surgery takes over six hours and is described as successful. I spend 8 days in the hospital recovering and am hooked up to a lot of uncomfortable tubes: nose tube, bladder catheter, oxygen tube, two IVs and two chest drainage tubes. I am given a clicker to dispense pain medicine and I spend most of the eight days either clicking or nodding off. Really brutal time physically.
In addition to tissue, 13 lymph nodes are removed. All tissues and nodes are negative for any signs of cancer. The surgeon declares me cured, the oncologist declares me in remission. Either way it is beautiful news.
Five days post-op. I have not had a shower or a shave and am feeling really greasy and uncomfortable. This was the first day I was able to, or cared about, using my phone. The staff is very generous with pain meds, and I welcome them.
July 6, 2010 – Return to UW for surgical follow up and to have final drainage tube removed. Extremely happy to get that uncomfortable tube out of my body. Besides chemo, the drainage tube was the single worst part of the experience phsyically. Absolutely miserable with this thing inside me. I could not get comfortable or sleep well at all.
In the office, the doctor literally told me to look away, hold my breath, and then yanked it out. I turned and looked and there was three feet of mucus-covered tubing coiled up on the exam table.
I said, “That was inside me?!?”
The doctor replied, “Wow, they probably didn’t have to use that much.”
September 24, 2010 – Three month CT scan at UW and follow up with Kristen Block, PA. This is the new world of “remission,” where I walk into a doctor’s office and there is a coin-toss chance that I will hear good news or really bad news. It’s kind of scary.
All scans look good. I am still in remission.
December 15, 2010 - Three month CT scan at Aurora and follow up with Dr. Bandealy. All scans look good and I’m still in remission. My scans are now pushed out to every four months.
March 11, 2011 – Annual endoscopy, first since surgery. Stomach and esophagus look good. Dr. Hernandez took a biospy from an area of scar tissue and it was negative.
April 8, 2011 – Four month CT scan at Aurora. Must wait five days for results. A little unnerving.
April 13, 2011 – CT results are negative for any signs of cancer. Still in remission. Looking and feeling better all the time.
August 11, 2011 – CT scan at Aurora.
August 16, 2011 – CT scan results are negative and I am still in remission. I had to wait five days for the results again. I like how they do it at UW Hostpital better; you get the scans and results on the same day. My next scan in scheduled for six months instead of four. This is a good sign and I am on my way to recovery.
February 15, 2012 – CT scan and blood tests are good. Still officially in remission. Life is good.
July, 23, 2012 – CT scan at Aurora. Guts were pretty rotten for almost 2 days from the contrast.
July 25, 2012 – CT scan results are negative and I am still officially in remission. I only had to wait for results for 2 days this time. All is well. Next appointment in January 2013.
January 18, 2013 – CT scan at Aurora.
April 9, 2013 – Four days after starting a new job, I get my annual endoscopy. The twilight anesthesia is fun for the people around me when I wake up. Everything is beautiful. I’ll take it.