So today is the first day that I decided to make my blog go live. Many of my friends and family have been contacting me to find out how my cancer diagnoses is going. I really appreciate all of the phone calls/emails, but it is so hard for me to contact everyone back. So I have decided to blog my experience to keep you posted on the latest details of my medical.
I really want to thank you all for the love and support I have received from all of you. I have never felt so loved and at this point in my life, I really needed to hear some of these things!!! While reading some of your letters, I cried and I laughed ---Thank you.
Today I have to go the hospital to get some blood work done.
I had a friend come with me (Out of respect, I choose to keep this person nameless)
He has been very concerned about me since he found out that I was diagnosed. He has been there for me since the beginning, however recently he has a hard time dealing with what I have been going through.
I know it hurts him to see me in pain, struggle and deal with uncertainty. I know it makes him uncomfortable when I tell him that I don't have any guarantees I also know that he loves me deeply.
However, despite his love for me, I was very surprised to find out that he agreed to come with me today to the hospital as I thought he would never go.
Not only did he come to the cancer hospital with me today, but he stayed with me in the room.
YG- I greatly appreciate your company today. I am proud of you. love you lots -- WG
Dr. Tanaka called back to inform me that he talked with Dr. Khatri and he does not want to perform the surgery yet. Dr. Khatri informed Dr. Tanaka to schedule a colonoscopy for me to see if I have any tumors in my colon.
Dr. Khatri wants to rule out the idea of the inflammation in my intestines which would cause inflamed lymph nodes. This would explain my 8 tumors.
So Dr. Tanaka ordered a urgent colonoscopy
UC San Diego called with the Results of my Blood Work
Wednesday September 25, 2008
3:45pm
I received a phone call from Debbie from UC San Diego Morse Cancer Center in San Diego. Debbie called to let me know that my blood work that was taken when I was down there had come back. Debbie told me that she and Dr. Lowy are concerned about the blood test results.
My Chromogranin A (CgA) blood test was a 69. Normal levels are 50.
The Chromogranin A test looks for an enzyme that a neuroendocrine tumor releases -- if this enzyme is released, it could mean that the cancer has spread
This causes concern because this test is my tumor marker. An elevated level of my tumor markers is not a good thing!
Most of my tests have been normal or slightly elevated (44, 46, 48), but it has never been 69. Dr. Lowy and Debbie recommended that I get a CT scan in the next 2 weeks and redo all of my blood work again ASAP.
Debbie from UC San Diego ordered the tests for me at the UC Davis Cancer Center
Dr Tanaka Call Back.
Wednesday September 25, 2008
4:35pm
I explained to Dr. Tanaka about what Debbie from UC San Diego had told me. Dr. Tanaka told me that he was concerned and this changes a few things. He explained that this is a good indication that the cancer might have spread in my body.
Dr. Tanaka ordered all of my cancer blood tests again, including Chromogranin A, Liver Panel, Sernatin, etc.
After leaving Dr. Tanaka's office, I was not feeling very good about my options.
I was driving back and I received a message from my friend Nick Schall. His text to me is as follows:
"Hey Josh, I know your busy and you have a lot on your plate right now, but I just wanted to say I love you and I hope your having a wonderful day. You inspire me to not fret about the little things in life"
If through my experience I can inspire one person to live a better life, then going through this experience has been worth it.
Nick doesn't know how much his text meant to me at that time....
I meet with Dr. Tanaka again today. Our discussion was about what happened with my second opinion in San Diego.
I told him about Dr. Lowy's suggestion of surgery. Dr. Tanaka agreed. He wants me to meet Dr. VJ Khatri -- a UC Davis Cancer Surgeon -- Dr Khatri is who Dr. Tanaka suggests to get my surgery done by.
Dr. Tanaka told me that he wants Dr. Khatri to review my case and make judgment if the surgery would be possible. Dr. Tanaka told me it would look promising.
We discussed my options
First and foremost; the newest item that has come into play is whether or not these tumors are tumors or enlarged inflamed lymph nodes.
I asked Dr. Tanaka how long a lymph node would say inflamed because if they are just inflamed, they have shown up on EVERY scan since June. However, Dr. Tanaka told me that I was asking the wrong question. I should not be asking how long lymph nodes stay inflamed, but I should be asking why they are inflamed!! He told me that if they are not tumors and they are inflamed lymph nodes, we need to figure out why they are inflamed. If they are inflamed lymph nodes, that means I might not have cancer but I could have Crones disease or Colitis
Crohn's disease or Colitis
Definition Crohn's disease is a form of inflammatory bowel disease (IBD), which involves ongoing (chronic) inflammation of the gastrointestinal tract. Crohn's-related inflammation usually affects the intestines, but may occur anywhere from the mouth to the anus (the end of the rectum). See also: Ulcerative colitis Alternative Names Inflammatory bowel disease - Crohn's disease; Regional enteritis; Ileitis; Granulomatous ileocolitis Causes, incidence, and risk factors While the exact chain of events that lead to Crohn's disease is unknown, the condition is linked to a problem with the body's immune system response. Normally the immune system helps protect the body from harmful substances. But in patients with Crohn's disease and other types of inflammatory bowel disease (IBD), the immune system can't tell the difference between good substances and foreign invaders. The result is an overactive immune response that leads to chronic inflammation. This is called an autoimmune disorder. There are five different types of Crohn's disease: • Ileocolitis is the most common form. It affects the lowest part of the small intestine (ileum) and the large intestine (colon). • Ileitis affects the ileum. • Gastroduodenal Crohn's disease causes inflammation in the stomach and first part of the small intestine, called the duodenum. • Jejunoileitis causes spotty patches of inflammation in the top half of the small intestine (jejunum). • Crohn's (granulomatous) colitis only affects the large intestine. A person's genes and environmental factors seem to play a role in the development of Crohn's disease. The inflammation related to Crohn's disease frequently occurs at the end of the small intestine that joins the large intestine, but it may occur in any area of the digestive tract. There can be healthy patches of tissue in between diseases areas. The ongoing inflammation causes the intestinal wall to become thick. The disease may occur at any age, but it usually occurs in persons between ages 15 and 35. Risk factors include a family history of Crohn's disease, Jewish ancestry, and smoking. www.webmd.com
Nevertheless, since we do not know, Dr. Tanaka was going to have my case go over to Dr. Khatri to see if he would do the surgery. Dr. Tanaka discussed my surgery options
Option 1: The surgery might not be possible because the tumors might be too small – this is something that Dr. Khatri would have to determine. However, if he determined that the tumors are too small, I would have to wait until mid-October to get another CT scan to determine if the tumors are gaining growth. Dr. Tanaka told me that he would also start me on a Sandostatin shot. The Sandostatin shots would suppress the cancer and the tumors. A Sandostatin shot is like a form of chemotherapy, however, I would have to give the daily shots to myself. Dr. Tanaka warned me that less than 15% of people react to the Sandostatin shots.
Sandostatin shots are given to people before they are given chemotherapy. The shot is the first line of defense to try to shrink the tumors. However there are side effects from taking this shot. The side effects that I could encounter are severe diarrhea, gallstones and vomiting I would have to give the shot to myself 3 times a day for many months!
Option 2: Dr. Khatri agrees to do the surgery. Dr. Khatri goes into my body and removes the 8 lymph nodes, tissue around the nodes and part of my intestines (not sure how much of my intestines he would have to take). However the outcome of the surgery could go 2 ways.
Outcome of Surgery Option A The surgery could be performed and we found out that the tumors are non-cancerous.. This would be a good thing!
Outcome of Surgery Option B The surgery could be performed and we found out that the tumors are cancerous. In this case, the doctors would be encountering an interesting problem with me. Being that my cancer is rare and uncommon, there is not much research on the treatment to cure this cancer. Dr. Tanaka told me that we could then go use the Sandostatin shots, but that might not be the best treatment as well.
Dr. Tanaka then took me to the National Comprehensive Cancer Network (www.nccn.org) and looked up the National research on Neuroendricrine Cancer.
According to the NCCN Practice Guidelines in Oncology –V.1.2008 the Neruroendocrine Tumors/Carcinoid Tumors Clinical Diagnosis would be as follows: Appendix Adbdominal/Pelvic CT less then 2 cm and confined to the appendix simple appendectomy 3 month postesection including H&P and Makers and CT/MRI
Dr. Tanaka has done all of this with me. However, the chart also states that there should be no metastasizing (spreading of the cancer) – this is when it gets concerning because if the 8 tumors are cancerous, this means that I have metastasized. If this happens, this would put me in the category of what Dr. Tanaka would call an “outlier” I asked Dr. Tanaka about receiving a form of chemotherapy. Dr. Tanaka then told me news I didn’t really want to know. Dr. Tanaka told me that there is no form of chemo that can cure this cancer. Dr. Tanaka told me that there needs to be a chemo program to effectively cure my cancer. However, according to Dr. Tanaka, chemo has not been established for a metastatic caricoid tumor, there are only trial drugs – Bevacizumab and Avastin.
Bevacizumab/Avastin
Examples Generic Name Brand Name bevacizumab Avastin How It Works Bevacizumab belongs to a group of drugs known as monoclonal antibodies. It blocks a protein called vascular endothelial growth factor (VEGF) that helps cancer cells grow and multiply. Bevacizumab inhibits the ability of the cancer to form and grow new blood vessels. Bevacizumab is an intravenous (IV) drug. Why It Is Used Bevacizumab is used with fluorouracil, leucovorin, and irinotecan (IFL) to treat metastatic colorectal cancer. For lung cancer, it is used with carboplatin and paclitaxel. How Well It Works When used to treat some cases of metastatic colorectal cancer, the combination of bevacizumab and IFL may slow tumor growth. People in one study who were treated with bevacizumab and IFL survived an average of 5 months longer than people who did not receive bevacizumab.1 Bevacizumab combined with carboplatin and paclitaxel has been shown to help people with advanced non-small cell lung cancer live longer.2 Side Effects Bevacizumab can cause serious side effects, including: • Holes in the colon (perforation) that may require surgical repair. • Bleeding in the lungs, when the medicine is used with chemotherapy for lung cancer. • Stroke. • Heart failure. • Blood clots. Other side effects can include: • Delayed wound healing. • Kidney damage. • High blood pressure (hypertension). • Headache. • Loss of appetite. • Mouth sores. • Diarrhea. • Weakness and fatigue. See Drug Reference for a full list of side effects. (Drug Reference is not available in all systems.) What To Think About Bevacizumab should be administered only under the supervision of a medical oncologist. Bevacizumab may cause birth defects. Do not use this medicine if you are pregnant or wish to become pregnant or father a child while you are taking it. Bevacizumab has been approved for use only by adults. There is no specific information comparing use of bevacizumab in children with use in other age groups.
So Dr. Tanaka told me not to worry about it until Dr. Khatri reviews my case and we would make decisions about my treatment after my review.
At 11:45am Dr. Tanaka left to go speak to Dr. Khatri at the UC Davis Tumor Board to review my case.
I live in the space of thankfulness - and I have been rewarded million times over for it. I started out giving thanks for small things, and the more thankful I became, the more my bounty increased.
That's because what you focus on expands, and when you focus on the goodness in your life, you create more of it. Opportunities, relationships, even money flowed my way when I learned to be grateful no matter what happened in my life.
"Say thank you!" Those words from my friend and mentor Maya Angelou turned my life around. One day about ten years ago, I was sitting in my bathroom with the door closed and the toilet lid down, booing and ahooing on the phone so uncontrollably that was incoherent.
"Stop it! Stop it right now and say thank you!" Maya chided. "But - you don't understand," I sobbed.
To this day, I can't remember what it was that had me so far gone, which only proves the point Maya was trying to make. "I do understand," she told me. "I want to hear you say it now. Out loud.
'Thank you.'" Tentatively, I repeated it:
"Thank you - but what am I saying thank you for?"
"You're saying thank you," Maya said, "because your faith is so strong that you don't doubt that whatever the problem, you'll get through it. You're saying thank you because you know that even in he eye of the storm, God has put a rainbow in the clouds. You're saying thank you because you know there's no problem created that can compare to the Creator of all things. Say thank you!"
So I did - and still do. Only now I do it every day. I kept gratitude journal, as Sarah Ban Breathnach suggests in Simple Abundance, listing at least five things that I'm grateful for. My list includes small pleasures: the feel of Kentucky bluegrass under my feet (like damp silk); a walk in the woods with all nine of my dogs and my cocker spaniel Sophie trying to keep up; cooking fried green tomatoes with Stedman and eating them while
they're hot; reading a good book and knowing another awaits.
My thank-you list also includes things too important to take for granted: an "okay" mammogram, friends who love me, 15 years at the same job (and loving it more than the first day I started), a chance to share my vision for a better life, staying centered, having financial security.
I won't kid you, having money for all the things I want is blessing. But as I look back over my journals, which I've kept since I was 15 years old, 99 per cent of what brought me real joy had nothing to do with money . (It had a lot to do with food, however.)
It's not easy being grateful all the time. But it's when you feel least thankful that you are most in need of what gratitude can give you:
PERSPECTIVE. Just knowing you have that daily list to complete allows you to look at your day differently, with an awareness of every sweet gesture and kind thought passed your way. When you learn to say thank you, you see the world anew. And as Meister Eckhart so eloquently stated: "If the only prayer you ever say in your whole life is 'Thank you God', that would suffice."
A Superhero is someone who might save you physical (Superman/Spiderman/He-Man)
A Hero is someone who might have saved you emotionally
Noah Webster defines hero as "a man of distinguished courage or ability, admired for his brave deeds and noble qualities."
I define hero in three names: Kevin Sullivan, Martha Church, Paul Molly. My hero's live throughout this country from Los Angelas to Connecticut. My hero's work everyday jobs -- actor, librarian My hero's are cancer survivors.
Lately, I turn to them for everything. They have been my love and support. I honestly can not express how much they mean to me.
After I found out that the doctors found 6-8 more tumors located in my lymph nodes, I realized that I need to find someone to talk too.
In these times of need, I ALWAYS turn to my mother. My mom has always had a way to calm me. She has helped me through the toughest times and decision of my life. I knew that when I spoke to my mom, I would feel better.
I called my mother.
I explain my situation. We cried, of course. We discussed my options, but she was always strong. She never let me go negative or think bad thoughts. She told me to stay positive and always look for the good in the situation. Though her advice made sense, I did not stay calm. I did not go to the positive. I began stressing more.
Why cant my mother comfort me? This became an even more frustrating/stress inducing problem for me. If my mother cant comfort me.. who can?
I began to talk to friends and family.
They would tell me stories about their friends/family who had cancer. Most of the stories ended with the person dying. This did not help me.. it actually made things worse. I knew that people were trying to help, but the last thing you want to hear is "well, my grandpa fought a good fight Josh, but he just lost the fight in the end" It really does not do well for you in the end!
Finally, I called my grandmother -- Nana.
I told her about how I was feeling and that I could not find comfort in much. I told her that peoples stories about theirfriends/family dying of cancer was not helpful, but hurtful. I also did not want to speak to someone who is in their mid 60, who is battling cancer because they kept saying "Josh, I have lived a long life and if it is my time... I'm ready." I remember thinking to myself... 'IM NOT READY!! I have not lived a long life!! This is not fair!!' I told all of this to my grandmother.
After speaking to Nana for a while, she recommended that I speak to Kevin, our next door neighbor at our cottage in Old Lyme CT.
What a great idea! I thought!
Kevin and I grew up together during the summers. We both lived in Connecticut, but only saw each other during the summer as kids. While I was in undergrad, Kevin moved to Los Angelas. I remember hearing a few years back that Kevin was diagnosed with testicular cancer. I remember him hearing that he went through a pretty bad treatment, but that he was alive and in remission.
So I sent my grandmother out on a mission -- to find Kevin's telephone number. Nana called me up about 2 hours later and relayed Kevin's phone number to me. She also told me that she gave Kevin my number.
Later that afternoon, I received a phone call from the LA area code. I picked up the call. It was Kevin. He asked me to tell him about everything going on in my life. We talked for a while. I told him everything about my cancer thus far.
He told me to fight He told me live He told me to stay positive He told me to ask questions He told me to get a chest x-ray to make sure the tumors were not in my chest He told me to enjoy life He told me to love He told me to relax
Honestly, he told me everything my mother told me, but when he said it, I was calm.
I found peace. In one 3 hour conversation, I found peace and was calm. Why? Because I was talking to a survivor. I was talking to someone who was diagnosed at the same age I was I was talking to someone who went to hell and back, but made it I was talking to someone who could relate to my thoughts, feeling and stresses
Kevin told me, before we hung up, to call him at any time. And I do Kevin is always there for me and told me that he will stay on the phone/visit as much as I need. Not as much as he can, but as much as I need!!
I was blown away by his generosity and his love.
To this day, Kevin and I talk daily. We talk about cancer. We talk about love. We talk about our work. We talk about our goals. We talk about living.
Kevin is my living angel. Someone/something put that thought into my grandmothers head to call Kevin for a reason! I don't want to question it I don't want to think about it I am just so happy that Kevin is here with me.
There are not enough words in the world to tell Kevin how appreciative I am to have him in my life. There is not enough money in the world to repay him.
John Lennon once sung "I get by with a little help from my friends." This statement could not be more true this weekend.
While I was in San Diego, I was able to hang out with one of my friends Levi and his new husband Karim.
What a great weekend. What a great couple. I am so grateful that I was able to hang out with them. I am so very grateful to have them in my life. It was nice to be with them to take my mind off of going to the doctors.
Levi is a life long friend. I know that I could always rely on him for anything. He is the type of guy who would give his right arm for me and I for him.
However, this is the first time I was able to meet Karim, Levis husband. What a guy!! He is an exact copy of me.. which means I loved him! .. of course!! He is funny, smart and very good looking :) Karim also has the biggest heart. We spent a great deal of time together while I was in San Diego-- we talk about life and death, we walked, we hung out on the beach and we even got kicked out of a meditation garden!! (long story -- ill explain later)
But by the end of the weekend, I had completely befriended a stranger!
Levi and Karim are amazing and I'm so happy to have them in my life.
"In good times, in bad times I'll be on your side forever more, that's what friends are for."
At 9:30am on Monday I went to the UC San Diego Morse Cancer Center located in San Diego, CA with my amazing friend Levi. Levi has been my friend for years! We meet in Boston MA at a flower shop. We talked about my favorite flower (Birds of Paradise) -- since then we became life long friends. He is the type of friend who you can stop talking too for years because life gets in the way and when we reunite, it is as if no time has pass-- we picked up right where we left off!! I love Levi and I was SO grateful that he was by my side today.
Walking into the Hospital, I have very high hopes with walking out with a plan -- a treatment plan! I remember parking the car in the parking lot at the hospital. I paused and looked Levi in the face and said "This is it. When we walk out of here today, I will have a better understanding of my treatment" Though I knew Levi was nervous, he played it off very cool!
We walked in to the hospital and I checked in. When my name was called, I was weighed, blood pressure checked, and brought to a waiting room... Levi was by my side.
First, we met Debbie. Debbie was Dr. Lowy advice nurse. She came in and introduced herself. We had spoken several times via the phone. It was nice to finally put a face with the voice! Debbie got right the point. She told me that the doctor reviewed my medical records and that I am going to need surgery. I will need the 8 lymph nodes taken out and at least 5 cm of my intestines removed as well. She answered several of my questions and then left. Dr. Lowy would soon be in to talk to me.
Levi and I discussed while we were alone in the room. He asked me what I thought about everything I was just told. I told him I was happy to hear that something was going to be done, even if it was goign to cause me a great deal of pain.
Dr. Lowy's head resident entered the room. She asked a few questions and then left.
5 minutes later, Dr. Lowy entered. We discussed surgery and his recommendations. He did recommend surgery but he also wanted to wait for 3 weeks to see if the tumors grew or stayed the same. Dr. Lowy's recommendation was to wait 3 weeks and get a CT scan. From results of the scan, I should have surgery. If the tumors were larger or stayed the same -- they should be removed. If they shunk, they could stay!
I thanked him for his recommendations. Dr Lowy requested a few blood tests, which I went to the Lab and drew my blood.
Levi and I left the hospital. I did not feel any more comfortable then when I walked in. I felt that my hopes and expecations for this visit were way too high. I did not feel that I got what I came for. I was told to wait.... and I have to be honest with you all.. waiting when you have cancer is like holding the world on your shoulders... it hurts, its stressful and you feel like your going to collapse under all of the pressure.
Nevertheless, Levi and I decided to go where we both could find some peace... the beach. We spend the remainder of that day on the beaches of La Jolla talking about life
During a yoga class at 24 Hour Fitness, I was not feeling well.
I kept feeling bad pain in my lower right region in my abdomen. During a downward dog position, I felt an horrible pain in my side and fell to the ground. The instructor of the class, Bobbie, walked over to me and asked me if I was ok. I began to sweat. I told her that I was not feeling well. Bobbie and I were very good friends. She told me to go home and rest.
On my drive home, I contacted my friend Tom Carroll.I described my pain to Tom and he looked it up on WebMD. Tom told me that it was my appendix. My appendix?! It can be. I have sent several students to the hospital in the middle of night due to their appendix bursting – they were in SO much pain, I was not. He advised me to go to the hospital. I told Tom that I did not want to go to the hospital… but Tom would not give up. He continued to tell me that I really needed to go and began to weigh the pros and cons of going. I was afraid that I would go and find out that I was constipated!! How embarrassing! Finally I told Tom that I would go to the hospital – however, I told him that just to get him off the phone. Instead, I lay down in my bed. While I was lying in bed, I came up with every excuse of why I should go: “I don’t want to go to the hospital on a Friday night its too busy,” “I don’t want to pay all that money to be told I was constipated,” “The ER is for an emergency, this is not that bad.” My side was killing me. The pain almost took my breath away. Finally about 30 minutes later, Tom called me to see what hospital I was admitted to. I told him I was not at the hospital. The next noise I heard was Tom’s truck starting up. I asked him what he was doing. He told me that he was coming to pick me up and take me to the hospital.I was pissed!
“FINE I’ll go!! “
“When?” Tom asked
“Now” I said angrily.
“Where”
“Mercy General, on J Street” I stated
“I’m going to call the hospital in 30 minutes to make sure you checked in”
“Fine”
I was upset, but happy that Tom was checking in on me. He also kept his word and called the hospital to make sure I was admitted.
I called Colby, my hall manager. I asked him to drive me to the hospital because my side hurt too much to drive. In route to the hospital, I tried to convince Colby several times to turn the car around. He drove to the hospital – with no stops!
We got to the hospital at 8pm.
I got a bed at midnight.
I was scanned at 1am
I was admitted for surgery at 2:30am
I was admitted to the hospital and taken to the operating room and underwent a laparoscopic appendectomy. According to my doctor, Christian Swanson MD, I did very well intraoperative without any complications. However, my appendix was not the only thing removed. An acute appendicitis with incidental neuroendrocrine tumor (size 2-mm) was found. It was a low-grade carcinoid.That is medical jargon for a cancerous tumor.
And so my journey begins.
June 10, 2007
I was released from Mercy General. I went home to recover.
June 18, 2007
Meeting with my surgeon, Christian Swanson at Mercy General, to discuss post surgery. He recommended that I get a colonoscopy to make sure that there were no more tumors or polyps.
June 20, 2007
Meeting the Dr. Jason Chang, my primary doctor with UC Davis Medical Center, to discuss post surgery. Dr. Chang discussed the findings from the surgery and helped me book my colonoscopy. Dr. Chang also recommended that I get an endoscopy procedure as well. Dr. Chang put me in contact with Dr. Cecilia Terrado with UC Davis Medical Center Division of Gastroenterology. We schedule both appointments
June 22, 2007
I went to the UC Davis Medical Center Main Hospital to get a colonoscopy procedure. My friend Brenda came with me.
Colonoscopy Description:
Colonoscopy is the endoscopic examination of the large colon and the distal part of the small bowel with a CCD camera or a fiber optic camera on a flexible tube passed through the anus. It may provide a visual diagnosis (e.g. ulceration, polyps) and grants the opportunity for biopsy or removal of suspected lesions. Virtual colonoscopy, which uses 2D and 3D imagery reconstructed from computed tomography (CT) scans or from nuclear magnetic resonance (MR) scans, is also possible, as a totally non-invasive medical test, although it is not standard and still under investigation regarding its diagnostic abilities. Furthermore, virtual colonoscopy does not allow for therapeutic maneuvers such as polyp/tumor removal or biopsy nor visualization of lesions smaller than 5 millimeters. If a growth or polyp is detected using CT colonography, a standard colonoscopy would still need to be performed. Colonoscopy can remove polyps smaller than one millimeter. Once polyps are removed, they can be studied with the aid of a microscope to determine if they are precancerous or not. Colonoscopy is similar to but not the same as sigmoidoscopy. The difference between colonoscopy and sigmoidoscopy is related to which parts of the colon each can examine. Sigmoidoscopy allows doctors to view only the final two feet of the colon, while colonoscopy allows an examination of the entire colon, which measures four to five feet in length. Often a sigmoidoscopy is used as a screening procedure for a full colonoscopy. In many instances a sigmoidoscopy is performed in conjunction with a fecal occult blood test (FOBT), which can detect the formation of cancerous cells throughout the colon.
Endoscopy Description:
Endoscopy is a minimally invasivediagnosticmedical procedure that is used to assess the interior surfaces of an organ by inserting a tube into the body. The instrument may have a rigid or flexible tube and not only provide an image for visual inspection and photography, but also enable taking biopsies and retrieval of foreign objects. Endoscopy is the vehicle for minimally invasive surgery.
Many endoscopic procedures are considered to be relatively painless and, at worst, associated with mild discomfort; for example, in esophagogastroduodenoscopy, most patients tolerate the procedure with only topical anaesthesia of the oropharynx using lignocaine spray. [1] Complications are not common (only 5% of all operations)[citation needed] but can include perforation of the organ under inspection with the endoscope or biopsy instrument. If that occurs open surgery may be required to repair the injury.
This procedure was a success. It went just as planned and nothing was found! However, after the procedure, I was gassy! J
July 9, 2008
I went to the UC Davis Medical Center Main Hospital to get an endoscopic procedure. My friend Ongy went with me.
Endoscopy Description:
Endoscopy is a minimally invasivediagnosticmedical procedure that is used to assess the interior surfaces of an organ by inserting a tube into the body. The instrument may have a rigid or flexible tube and not only provide an image for visual inspection and photography, but also enable taking biopsies and retrieval of foreign objects. Endoscopy is the vehicle for minimally invasive surgery.
Many endoscopic procedures are considered to be relatively painless and, at worst, associated with mild discomfort; for example, in esophagogastroduodenoscopy, most patients tolerate the procedure with only topical anaesthesia of the oropharynx using lignocaine spray. [1] Complications are not common (only 5% of all operations)[citation needed] but can include perforation of the organ under inspection with the endoscope or biopsy instrument. If that occurs open surgery may be required to repair the injury.
This procedure was also a success. It went just as planned and nothing was found! However, after the procedure, I was slept like a baby.
July 14-17, 2007:
I took a vacation with my friends Brenda, Bobbie, Ongy and Alissa. We flew to Seattle WA, a location I have always wanted to visit. We went kayak whale-watching off of Victory Island. We visited Pikes Place, the Space Needle and the waterfront. It was a blast. However, at 7am, while driving from Seattle to Canada, I lost my eye sight. I was driving and all of the sudden, it became blurry and I was having trouble seeing. I asked Brenda if it was getting dark outside. She asked if I was ok. I said no. I started to pull over the car, while trying to blink and clear my eyesight, but it did not work. I began to see double, then triple. Eventually I lost all eye sight. I pulled over the car and my eye sight was gone. It stayed that way for a few minutes. It was quite panicking. A few minutes later, my eye sight came back. However, everything was blurred and in slow motion. It was a very odd sensation.
I called Dr. Chang immediately. Dr. Chang made an appointment with me for Monday July 18th.
July 18, 2007
Meeting the Dr. Jason Chang, my primary doctor with UC Davis Medical Center, to discuss the eye issue. Dr Chang did a few eye tests and scheduled me an MRI and a CT scan.I was informed that it could have been one of three things: an ocular migraine, a brain tumor or a stroke. A CT scan and MRI would be able to tell. In the meantime, I was referred to Dr. Melissa Barnett OD, FAAO, the Senior Optometrist at the UC Davis Health System.
Dr. Chang also discussed the findings from the colonoscopy and endoscopy procedures and told me that everything was ok. However, due to the finding of the low-grade carcinoid neuroendrocrine tumor (size 2-mm), I was told that I would need to be referred to the UC Davis Cancer Center to meet with an oncologist. However, before I went, Dr. Chang ordered a CT scan of my abdomen at the UC Davis Lawrence J. Ellison Ambulatory Care Center.
July 24, 2007
10:20am: I showed up for a CT scan of my abdomen at the UC Davis Lawrence J. Ellison Ambulatory Care Center to see if I had any more tumors in my abdomen.
July 26, 2007
11:35am: I showed up for a MRI of my brain at the UC Davis Lawrence J. Ellison Ambulatory Care Center to see if I had any brain tumor or brain damage
9:30am: I had an appointment with Dr. Melissa Barnett. She did several eye tests, but did not see any damage to my eye or did not see any tumors. She schedule me for an eye field test on Aug 1, 2007
July 30, 2007
I received a letter in the mail from my doctor, Dr. Jason Chang. The letter stated as follows:
Dear Mr. O’Connor
I’ve reviewed your MRI of the brain results and want to give them to you.
Your MRI of the brain is normal
Please keep your scheduled appointments with the eye clinic and GI clinic
Sincerely
Jason Chang, MD.
My first thought: Thank God!!
MRI Brain Findings with Contrast:
Verntricles and cortical sulci are normal. No abnormal parenchymal signal or enhancement. No intracranial hemorrhage, mass effect, midline shift, or extra axial collection. Flow voids at the skull base are preserved. No restricted diffusion. Minimal mucosal disease in the left maxillary sinus.
Non-medical terminology: I was clear!!
CT Abdomen and CT Pelvis, with Contract Findings:
After the intravenous administration of 125 mL of Omnipaque 350 nonionic contrast, axial helical CT scanning was performed from the lung bases to the pelvic floor. Delayed scans were also obtained through the kidneys during the excretory phase.
The lung bases are clear. There is no intraperitoneal free air or free fluid. The liver, spleen, adrenal glands, pancreas, and kidneys are normal. There is no hydronephrosis in the kidneys bilaterally. The abdominal aorta and retroperitoneal are normal. There is no adenopathy throughout the abdomen or pelvis.
Surgical clips are present at the medical cecum due to the recent appendectomy. No fluid collections or masses, abscesses or adenopathy is seen at or around the surgical bed. The postoperative area is entirely normal. The bowel loops are nondileated. The bony pelvis and lumbar spine are unremarkable. The visualized lung bases are clear
Non-medical terminology: I was clear and tumor free!!
August 1, 2007
1pm: I went to my eye test schedule by Dr. Melissa Barnett. All came up fine. The conclusion to my vision loss was described as an ocular migraine brought on by stress.
August 23, 2007
8:30am: I returned to the UC Davis Medical Center Main Hospital Division of Gastroenterology to have a follow up appointment with Dr. Cecilia Terrado. Dr Terrado told me that based upon the scans and the tests, I was clear. I was told that I had little inflamtion, little redness, no ulcers. All was clear but Dr. Terrado wanted to check me in the next 4-6 weeks. She did put me on a prescription because of a little inflammation in my rectum from the procedure.
It was also suggested that I should probably have a colonoscopy within the next 2 years to make sure I stay clear. Dr. Terrado and I parted ways.
August 29, 2007
The UC Davis Cancer Center
This was my first visit to the UC Davis Cancer Center. This was actually my first visit to a cancer hospital. Needless to say, I was very nervous, high anxiety and my blood pressure was high.When my friend Brenda and I stepped through those entry doors to the cancer hospital, I realized that I was a cancer patient. It scared me greatly.
I met with Dr. Steven L Chen, MD MBA – out of the Division of Surgical Oncology, Department of Surgery at the UC Davis Cancer Center. Brenda and I left the waiting room, where there were too many people in the room waiting to see the doctors. I thought to myself, ‘this is not fair, all of these people are here for the same reason I am here for and it is not fair.’ When my name was called, we left the waiting room and we were led into the back room. I was weighted, blood pressure was taken, I was asked if I was in pain on a scale of 1-10 (10 being extreme pain). After all of the administrative paperwork was completed, we were led down a long hallway to the last room on the left. While walking to our room with our nurse, we passed several rooms filled with cancer patients – some worse than others.
Brenda and I were led into a room where we sat for Dr. Chen. After about 10 minutes, Dr. Chen walked into the room with a crisis team – a counselor, a nurse and a crisis specialist. I immediately became even more nervous!“What does all of this mean?” I thought.
I looked over at Brenda, she gave me reassuring eyes.
Dr. Chen informed me that during my appendix removal, the surgeon found a neuroendrocrine tumor. The surgery had a negative margin, which means that there was no tumor left behind in my body. Dr. Chen continued to say that there is a low change of metastasizing (reoccurring) however, if it does come back, it would happen very slowly. He also told me that if it was to come back, I might not see a lot of symptoms, unless the tumor is very large and causes main or serious hormonal problems. Dr. Chen encouraged me to coninute my follow up with my gastroenterologist for the proctitis that was seen on colonoscopy. He has taken the liberty of drawing a chromogranin on that say and has informed me that the unless this chromogranin is significantly high, we will probably not do any future work on me. I was referred to the medical oncologists for continued follow up and I was instructed to call if I developed any new symptoms, particularly any symptoms of carcinoid syndrome.
Dr. Chen recommended that I get a Chromogranin A (CgA) blood testing, which is considered to be the best test for detecting carcinoid tumors, and for monitoring their activity. I was told that I would need to get this test every 3 months.
Dr. Chen told me that he was going to pass my case and daily care to Dr. Michael Tanaka because he is an endocrine surgeon/endocrine oncologist.
An appointment with Dr. Tanaka was scheduled for September 14, 2007 at the UC Davis Cancer Center
August 30, 2007
The original email I sent out to family and friends on August 30, 2007 to keep them posted on my progress.
Hello Family and Friends,
I am sorry to do this in a mass email, but instead of calling each of you and telling this story hundreds of time, I felt this would be the most efficient way. I do apologize for the lack of personal communication with this story.
I first and foremost want to thank you all of keeping me in your thoughts and prayers over the past few months. This has been a very challenging time for me, but it has been much better with your support and knowledge of having each of you by my side.
Today I went to go see the oncologist at the UC Davis Cancer Center in Sacramento CA. My oncologist is a doctor who is known around the country for his specialty with cancer research. I have been awaiting this appointment since June 1st, so it has been a long time coming.
Background:
The reason this appointment took so long due to the UC Davis Oncology Department. The Department wanted to have all of my test results for review before seeing me and making a final decision on my medical condition. All tests began on June 1st when my appendix burst and I went into emergency surgery. During surgery, my surgeon found a tumor – both my appendix and tumor was removed. Since then, my doctor ordered a host of tests, including but not limited to, a colonoscopy, an endoscopy procedure, MRI, CAT-scan, blood/urine work, white blood cell count, vision tests, field eye tests, etc… After each test, the doctor would tell me “You really need to speak to your oncologist.” Needless to say, that is not a comforting phrase to hear from each of doctor. So to make a long story short, 7 doctors, 18 tests and 3 months later, I finally met with my oncologist TODAY!
The News From the Oncologist:
The news was sobering. My oncologist told me that the tumor that was removed from me was a Neuroendocrine Tumor -- this is a cancerous tumor. The oncologist told me that I have a rare cancer that is only seen in about 1 in 400 cancer patients – a neuroendocrine tumor located in my appendix. He also informed me that this is the best cancer to get because it is a slow moving cancer that takes a great deal of time to form; making easier for early detection and prevention.
After the removal of my appendix and tumor, my pathology report stated that I have a negative margin, which means that there was no tumor left behind. My oncologist echoes this finding. Very good news! The bad news is that it could metastasize, but if it does, it would come back slowly and could be detected early. However, the symptoms will be very hard to see because it is mainly a hormonal issue. At this point, I asked my doctor what my chances are of the cancer metastasizing and he told me that my chances are good. The stats that he gave me are as following:
20% of patients with my cancer have a reoccurring incident within 5 years.
40-45% of patients with my cancer have a reoccurring incident within 15 years.
After reviewing my scans, my tests, and my charts; my oncologist informed me that it is very possible for me to have a reoccurring incident; so I have to watch myself.
The Crazy News:
My oncologist informed me that my appendix bursting was a blessing in disguise. According to the reports, my appendix did not break due to the tumor and/or cancer. However, the oncologist did tell me that if my appendix did not break and if the cancer was not detected within only 5 more years, he would have had to removed the right half of my colon and parts of my intestines. This also would have been needed to be done if the tumor was located only 5 millimeters north of where it currently found. He told me that there were angels sitting on my shoulders. (Thank you Auntie Kay and May) Timing in my situation was everything… and I know that in this situation, I am very lucky.
Now What Do I Do?
After discussing what kind of cancer I have, we discussed what I should do now. He told me that due to the risk of a high reoccurring rate in my body, I would need to see the oncologist once a year for the rest of my life.
Just to make sure that there is no residual cancer in my body, the oncologist ordered a Chromogranin A Test, which I took today. A Chromogranin A Test is as follows:
Chromogranin A (CgA) Testing
Chromogranin A (CgA) blood testing is considered to be the best test for detecting carcinoid tumors, and for monitoring their activity. Elevated levels of CgA are found in 80-100% of patients with carcinoid tumors.
CgA is a protein found in carcinoid tumor cells, and it may be secreted into the blood. A blood sample is taken, and the level of CgA in the bloodstream is determined.
A CgA test is fast, easy to perform, and accurate. However, a positive test result does not always indicate carcinoid tumors are present, because CgA levels can also be increased by neuroendocrine tumors. Therefore, further testing must be done to make a definitive diagnosis of carcinoid syndrome.
How the Test Is Done
A blood sample is taken and then tested with a CgA-specific enzyme-conjugated antibody. The antibody and enzyme bind the CgA protein as a "sandwich" — the purpose of the antibodies is to bind with the CgA protein, and the enzymes produce color. The intensity of the color is proportional to the specimen's CgA concentration. The CgA test uses CgA-specific antibodies to measure the level of CgA in the body.
Measurements may vary with meal consumption so patients are required to fast before a CgA test. CgA tests are performed every 3 to 6 months.
From Wikipedia.com
I will get the results of this test back in 2 weeks. I do have to go back to the oncologist office on September 14th to meet with a Hematology Oncologist. A Hematology Oncologist specializes in chemotherapy and blood work. This hematology oncologist will review my blood tests. If I have a high levels of CgA, then I will need to have another test done called a Octreotide Test. A Octreotide Test is when the doctor would inject me with a nuclear chemical to highlight the endocrine cells. These cells are what causes the cancerous tumors, so my doctors will be watching them very closely (for now and the rest of my life.) If they find a high concentration of them in one area, this is when the doctor would have me go through localized radiation. However, if they were found in high numbers throughout my body, this is when the doctor would have me go through chemotherapy.
However, at this point, my doctor would like to see the blood results come back before making any decisions; yet he remains positive that I should be fine!
So that is it! You are now completely up-to-date!
Again, thank you all for your thoughts and prayers.. without all of you, this process would have been a lot harder.
So, this is just another fun thing to add to my resume:
Eagle Boy Scout
Bachelor Degree
Masters Degree
Cancer Survivor!!!!
I am in good spirits!
Thank you all
Josh O’Connor
September 14, 2007
2pm
The UC Davis Cancer Center
I met with Dr. Tanaka. I also meet Dr. Tanaka’s Advise Nurse, Carolyn Wyler, RN.
Again, walking into the UC Davis Cancer Center, I was filled with nervous energy, high anxiety and high blood pressure.Brenda and I walked in and met the staff. We were very welcomed and were surprised with the attitudes of everyone working at the Center. I expected it to be more of a somber note, but it wasn’t. The nurses and doctors were very friendly and this made me more comfortable.
Dr. Tanaka is an angle here on earth! He took all the time in the world to answer all of my questions, and believe me, there were a lot of questions. Dr. Tanaka is a very methodical thinker and he likes to rule things out before coming up with a conclusion or a decision. I appreciate his thinking; however it was hard to understand from time to time. Brenda had to reassure me that things were going as planned.
Dr. Tanaka immediately wanted to run tests to see where my cancer markers stood.
Dr. Tanaka ordered the following tests:
Comprehensive Metabolic Panel
A comprehensive metabolic panel is a blood test that measures your sugar (glucose) level, electrolyte and fluid balance, kidney function, and liver function.
Glucose is a type of sugar your body uses for energy. Electrolytes keep your body's fluids in balance. They also help keep your body working normally, including your heart rhythm, muscle contraction, and brain function. The kidneys help keep the right balance of water, salts, and minerals in the blood. They also filter out waste and other unneeded substances from the blood. The liver filters blood, helps with digestion, and produces some vitamins and other substances that the body needs. It also controls the amounts of glucose, protein, and fat in the blood and releases substances that keep your immune system healthy.
Your doctor may order a comprehensive metabolic panel as part of a regular health examination. Your doctor may use this test to check on a medical condition, such as high blood pressure, or to help diagnose a medical condition, such as diabetes.
This panel measures the blood levels of sodium, potassium, calcium, chloride, carbon dioxide, glucose, blood urea nitrogen, creatinine, protein, albumin, bilirubin, and liver enzymes. For more information, see the medical tests:
Patient may be asked to stop eating and drinking for 10 to 12 hours before this blood test.
From WebMD.com
CBC with auto Diff
A complete blood count (CBC) gives important information about the kinds and numbers of cells in the blood, especially red blood cells, white blood cells, and platelets. A CBC helps your health professional check any symptoms, such as weakness, fatigue, or bruising, you may have. A CBC also helps him or her diagnose conditions, such as anemia, infection, and many other disorders.
A CBC test usually includes:
·White blood cell (WBC, leukocyte) count. White blood cells protect the body against infection. If an infection develops, white blood cells attack and destroy the bacteria, virus, or other organism causing it. White blood cells are bigger than red blood cells but fewer in number. When a person has a bacterial infection, the number of white cells rises very quickly. The number of white blood cells is sometimes used to find an infection or to see how the body is dealing with cancer treatment.
·White blood cell types (WBC differential). The major types of white blood cells are neutrophils, lymphocytes, monocytes, eosinophils, and basophils. Immature neutrophils, called band neutrophils, are also part of this test. Each type of cell plays a different role in protecting the body. The numbers of each one of these types of white blood cells give important information about the immune system. Too many or too few of the different types of white blood cells can help find an infection, an allergic or toxic reaction to medicines or chemicals, and many conditions, such as leukemia.
·Red blood cell (RBC) count. Red blood cells carry oxygen from the lungs to the rest of the body. They also carry carbon dioxide back to the lungs so it can be exhaled. If the RBC count is low (anemia), the body may not be getting the oxygen it needs. If the count is too high (a condition called polycythemia), there is a chance that the red blood cells will clump together and block tiny blood vessels (capillaries). This also makes it hard for your red blood cells to carry oxygen.
·Hematocrit (HCT, packed cell volume, PCV). This test measures the amount of space (volume) red blood cells take up in the blood. The value is given as a percentage of red blood cells in a volume of blood. For example, a hematocrit of 38 means that 38% of the blood's volume is made of red blood cells. Hematocrit and hemoglobin values are the two major tests that show if anemia or polycythemia is present.
·Hemoglobin (Hgb). The hemoglobin molecule fills up the red blood cells. It carries oxygen and gives the blood cell its red color. The hemoglobin test measures the amount of hemoglobin in blood and is a good measure of the blood's ability to carry oxygen throughout the body.
·Red blood cell indices. There are three red blood cell indices: mean corpuscular volume (MCV), mean corpuscular hemoglobin (MCH), and mean corpuscular hemoglobin concentration (MCHC). They are measured by a machine and their values come from other measurements in a CBC. The MCV shows the size of the red blood cells. The MCH value is the amount of hemoglobin in an average red blood cell. The MCHC measures the concentration of hemoglobin in an average red blood cell. These numbers help in the diagnosis of different types of anemia. Red cell distribution width (RDW) can also be measured which shows if the cells are all the same or different sizes or shapes.
·Platelet (thrombocyte) count. Platelets (thrombocytes) are the smallest type of blood cell. They are important in blood clotting. When bleeding occurs, the platelets swell, clump together, and form a sticky plug that helps stop the bleeding. If there are too few platelets, uncontrolled bleeding may be a problem. If there are too many platelets, there is a chance of a blood clot forming in a blood vessel. Also, platelets may be involved in hardening of the arteries (atherosclerosis).
From WebMD.com
Chromogranin A
Chromogranin A (CgA) blood testing is considered to be the best test for detecting carcinoid tumors, and for monitoring their activity. Elevated levels of CgA are found in 80-100% of patients with carcinoid tumors.
CgA is a protein found in carcinoid tumor cells, and it may be secreted into the blood. A blood sample is taken, and the level of CgA in the bloodstream is determined.
A CgA test is fast, easy to perform, and accurate. However, a positive test result does not always indicate carcinoid tumors are present, because CgA levels can also be increased by neuroendocrine tumors. Therefore, further testing must be done to make a definitive diagnosis of carcinoid syndrome.
How the Test Is Done
A blood sample is taken and then tested with a CgA-specific enzyme-conjugated antibody. The antibody and enzyme bind the CgA protein as a "sandwich" — the purpose of the antibodies is to bind with the CgA protein, and the enzymes produce color. The intensity of the color is proportional to the specimen's CgA concentration. The CgA test uses CgA-specific antibodies to measure the level of CgA in the body.
Measurements may vary with meal consumption so patients are required to fast before a CgA test. CgA tests are performed every 3 to 6 months.
From Wikipedia.com
Other Miscellaneous Test
Blood work
Serotonim
Before leaving, I schedule another appointment with Dr. Tanaka for December 14, 2007 for another check up. This appointment will stand unless the above tests showed concern, which would speed up my appointment.
December 14, 2007
UC Davis Cancer Center
In meeting with Dr. Tanaka for my 10 week check up.
I was having a great deal of pain in my lower right region in my abdomen and right hip over the past few weeks. Dr. Tanaka made an urgent referral to Orthopedic Surgery for a persistent hip (right hip had a great deal of pain, but not as much as the left hip). I was having discomfort, described as sharp pain as well as weakness in the upper leg that was aggravated by walking. On a scale of 1-10 (10 being horrible pain), I was a 4-5; even while sitting. On December 9, 2007, radiographic review of the hips were performed and returned consistent with femoral acetabular impingement bilaterally. For the above findings and persistence of pain, MRI of the pelvis was recommend for further investigation in conjunction with an Orthopedic Surgery referral
As for my history of appendiceal carcinoma tumor, I, according to Dr. Tanaka, have maintained my performance status, including control of blood pressure elevation with weight loss. My blood pressure has decreased a bit and so has my weight. A return visit will be schedule in 10 weeks to review my clinical status. Upon my return visit, I needed to get a few tests done like a chromogranin A, serotonin, 24-hour urinary 5HIAA, as well as a testosterone level test.
December 16, 2007
The original email I sent out to family and friends on December 16, 2007 to keep them posted on my progress.
Hello All,
My 3 month doctor’s appointment with my cancer specialist did not go as well as I hoped it would. As many of you know, I have been having pain in my right hip for the past few months. My doctor at first thought it might be arthritis, but if it were to be arthritis, I would have it in both hips. (gosh, I feel old! I am 26 and being tested for arthritis! ) However, I do not have pain in both hips, just in my right on. I feel pain when walking/running (not constant, but I can feel it)
My doctor has ruled out arthritis (which is good) however my doctor is now concerned that the cancer has spread to my joints. He has ordered a radiation hip x-ray. This x-ray will show if there is a tumor in my hip/joints. Depending on the results of the x-ray, I could potentially have bone radiation; which I have been told is very painful.. ugh. But, let’s take more step at a time….x-ray first!
I was suppose to have the x-ray done on Friday, but I was a bit overwhelmed with the news and needed to think about it. I have contacted my primary care doctor and have set up an appointment with him this week to discuss the x-ray. There are other things that need to be discussed (ie: weight loss, reduce my high blood pressure, etc.)
So, I have a doctors appt on Tuesday at 10:45am, and at 2:20pm with my GI doctor to discuss my GI track. I also have a doctors appt set for Friday at 9:30am with my primary care doctor, however, he would like to see me earlier in the week and is going to try to fit me in. I also might have to have the radiation hip x-ray this week as well…
I know that this is the worst week to do this with closing and finals… I have (and will continue to try to) scheduled all of my appts in the early morning this week, so that it will not affect closing/ meetings/schedules.
My Staff: You guys rock! I thank you so much for being so supportive! All of you are WAY too attentive… you all knew I was a bit down this weekend! I thank you for asking if I was well. I want to reassure you that you will have my complete support! We can discuss more at staff meeting on Monday – if you have any questions, please feel free to ask!
I just wanted to keep you all informed. I do want you to know that I am very positive about all of this, but I just was overwhelmed this weekend. Lastly, I wanted you all to know that I really appreciate all of your support and care. Though I do not have biological family out here, I do feel that you are all my family and appreciate having all of you in my life!
Ok , with that said, lets get through this week! We all want to wrap up this semester and go home for the holidays!
Thanks again to you all,
Josh
April 25, 2008
4pm
3 month check up with Dr. Tanaka.
All was fine. Some of my blood work came back slightly elevated. However, it was not elevated enough to cause concern. The tests were all reordered -- chromogranin A, serotonin, 24-hour urinary 5HIAA, comprehensive metabolic panel, vasoactive intestional peptide, gastin as well as a testosterone level test. Over the next 3 weeks, I would be in and out of the hospital taking test after test.
May 14, 2008
4:30pm
Meeting with Dr. Tanaka
My blood tests came back high. Dr Tanaka was concerned about the cancer metastasizing to my liver. I will still having a great deal of pain in my lower right abdomen. Dr. Tanaka ordered liver panels and blood tests. I have been going to the hospital for the past three weeks. It has been taxing on my body and my stress levels. I have to keep reminding myself that this is saving my life.
May 19, 2008
Email to my Family and Friends:
Hello All
Many of you have been asking about my health. Well… it's ok. I was in the hospital for the past few weeks. My doctors have found that my liver is not doing well. They thought that the cancer had spread to my liver based upon my liver panels and blood tests. I was in and out of the cancer hospital for 3 wks now. Last week, my oncologist told me that I have early stages of Liver Cancer, based upon the tests. (ie: multiple blood tests and liver panels spread over a 4 wk period) With each test I took, the results looked worse and worse.
He ordered me a CAT scan for this week to see if I had spots on my liver and also ordered another liver panel & a series of blood tests. And guess what happened.... my blood tests came back normal! So my doctors are completely stumped! They cannot figure out why my tests are going up and down so quickly. One of my doctors is saying that it cannot be cancer of the liver because my tests would have never come back to normal.
So this coming week, I have to go back to the cancer center and have another series of tests done, just to make sure. It has been a very stressful time for me. I have lost over 15 pounds, but it was needed and I was working on losing the weight.
I will keep you posted on the details as they come about.
Thanks for the thoughts and prayers.
Josh
June 30, 2008
UC Davis Cancer Center:
Meeting with Dr. Tanaka.
I am not feeling well. I went to meet with Dr. Tanaka to discuss the pain and my hot flashes. I was very concerned about the results of the tests and I requested that I get some clarification on why my blood tests are elevated. I wanted to know for sure that I was ok. I asked if we could do another CT scan to compare my abdomen to the June 2007 CT scan of my abdomen. Dr. Tanaka told me that we could order a CT scan. The scan was schedule for late July.
August 13, 2008
My parents 30th wedding anniversary
My first day of RA training
Phone call from Dr. Tanaka
6:15pm – 15 minutes before my first RA staff meeting – I was in my office talking with my hall manager Colby Moss and Theresa Kavanagh
Dr. Tanaka called me and asked me if I was driving. I knew it was not good news.
He informed me that he had the results of my blood tests and the CT scan. He informed me that the blood tests had come back normal, however the CT scan did not. The CT scan showed that there were 6+ tumors found in the site of where my appendix once was. To make matters worse, the tumors are located in the lymph nodes. The tumors are at least 1.1 cm., the size of a small blueberry or your pinky fingernail. The original tumor removed from my body was 2mm, the size of a pinhead.
Dr. Tanaka spoke with urgency. It make me more and more nervous. Theresa and Colby decided to leave after hearing my tone of voice and because it was almost 6:30pm. They left to meet staff and start the meeting.
Dr. Tanaka told me that this was very serious and that the cancer very well has spread. He told me that I might need to be transferred to UC San Francisco because they have a trial study with this type of cancer. We started to discuss chemotherapy and surgery. We also began to discuss a daily shot of sandostatin injections.
Sandostatin Inj Uses
Octreotide is used to treat severe watery diarrhea and sudden reddening of the face and neck caused by certain types of tumors (e.g., carcinoid tumors, vasoactive intestinal peptide tumors) that are found usually in the intestines and pancreas. The symptoms occur when these tumors make too much of certain natural substances (hormones). This medication works by blocking the production of these hormones. By decreasing watery diarrhea, octreotide helps to reduce the loss of body fluids and minerals.
Octreotide is also used to treat a certain condition (acromegaly) that occurs when the body makes too much of a certain natural substance called growth hormone. Treating acromegaly helps reduce the risk of serious problems such as diabetes and heart disease. Octreotide works by decreasing the amount of growth hormone to normal levels.
This drug is not a cure for these conditions. This medication is usually used with other treatment (e.g., surgery, radiation, other drugs).
How to use Sandostatin Inj
This medication is usually given by injection under the skin, usually 2 to 3 times a day or as directed by your doctor. Depending on your condition, it may be given by injection into a vein by a health care professional.
If your doctor directs you to inject this medication under the skin yourself, learn all preparation and usage instructions from your health care professional. Learn how to store and discard needles and medical supplies safely. If you have questions, ask your health care professional.
Before using, check this product visually for particles or discoloration. If either is present, do not use the liquid. Before injecting each dose, clean the injection site with rubbing alcohol. Change the location of the injection site each time to avoid problem areas under the skin.
Dosage is based on your medical condition and response to treatment.
Use this medication regularly to get the most benefit from it. To help you remember, use it at the same times each day.
Tell your doctor if your condition does not improve or if it worsens.
My heart stopped. I could not believe what he was telling me. I actually don’t remember the conversation after that. Dr. Tanaka told me that he would be calling me the next day to order a test called an Octreodtide Scan Test
An octreotide scan is a type of radionuclide scan used to find carcinoid and other types of tumors. Radioactive octreotide, a drug similar to somatostatin, is injected into a vein and travels through the bloodstream. The radioactive octreotide attaches to tumor cells that have receptors for somatostatin. A radiation-measuring device detects the radioactive octreotide, and makes pictures showing where the tumor cells are in the body. Also called somatostatin receptor scintigraphy and SRS.
From Wikipedia.com
I thanked Dr. Tanaka and hung up.
I called my mom and cried.
“Happy Anniversary Mom, my cancer has spread….”
August 27, 2008 – September 2, 2008
My Octreotide Scan
This is a 5 day test.
On day 1, I went to the UC Davis Radiology Department, located in the UC Davis Main Hospital. I was injected with a radioactive gel into my right arm that traveled through my bloodstream. That was it for day one. I needed 24 hours for it to go through my body
Day 2-5 I would go and get scanned. I would sit in a large machine with cameras that would sit on my chest, back and sides. I would have to contort my body in a few different directions to get the pictures they were looking for. It was about 2-4 hours per day and I had to sit completely still. The nurses were great! We would chat and talk about the weather/news/relationships. It was not a horrible situation, besides the fact that this test would tell me a great deal about my future.
During the conversations with the nurses, I found out that this 5 day test cost a grand total of $25,000. I was blown away.
September 3, 2008
Phone call from Dr. Tanaka
Dr Tanaka called me to give me the results of my Octriotide Scan.
When he called, he asked me if I was driving. I said no.
He told me that if I was driving, to pull my car over.
I became scared again.
Dr Tanaka told me that my Octriotide scan has come back a false negative.
Immeditally I was wondering what that meant. I think I asked about 10 questions in about 30 seconds. Dr. Tanaka told me that a negative reading on an Octriotide Scan meant that there was no cancer in my body, however, because I had symptoms and I have 6-8 tumors in my lymph nodes, it would be considered a false negative.
In fear, I asked Dr. Tanaka what my next steps should be.
He responded that he is going to order an urgent order to get me a biopsy.
He recommended that I get each of my tumors biopsied so that we can see if the tumors were 100% cancer.
Dr. Tanaka also told me that he was going to bring my case to the UC Davis Cancer Board and Tumor Board. Both these boards are a team of doctors, radiologists, surgeons’, and chemotherapy specialists that review complicated cases. He was going to have the board review my case and he would get back to me. In the meantime, he was going to order me a biopsy.
I told Dr. Tanaka that at this point, since things are so complicated, I would like to get a second opinion.
Dr. Tanaka agreed.
I started right away.
September 4, 2008
I called my cousin down in San Diego, CA – Mimi. Mimi is a doctor in San Diego. She is not an oncologist, but she has connections. After calling Mimi and leaving her a message of help on her voicemail, she called me back 3 hours later. She made one phone call to Dr. Andrew Lowy at the UC San Diego Morse Cancer Center, located in San Diego, CA. She gave me his information and the information of his advice nurse, Debbie. I called as soon as I hung up.
I spoke to Debbie who is a very cheerful lady. She informed me that I would have to collect my entire medical record and we would schedule the appointment for me to fly down to San Diego for Monday September 15th. I had 10 days to collect a lot of information.
I needed to contact UC Davis Medical Records, UC Davis Radiology Film Library, UC Davis Oncology, and UC Davis Patient Records.I also needed to contact Mercy General Medical Records and Mercy General Radiology because that is where my original surgery took place.
I also had to book a flight to San Diego and rent a car.
During all of this, I contacted my new heros –
Kevin Sullivan –Testicular Cancer Survivor
Martha Church – Breast Cancer Survivor
Paul Molly – Cancer Survivor
See more on them later – they are my support, my sanity, my heros!
September 12, 2008
Email to my staff
Hey Staff,
This is just a reminder that I will not be in the office on Monday as I will be getting a second opinion from the UCSD Morse Cancer Center this weekend. I will return on Monday night late and will be back in the office on Tuesday Morning.
FYI: I will not have my cell phone on Monday.
If you need anything, please contact Colby or Theresa
All Staff: There will still be a staff meeting in Sutter Hall on Monday. Please attend at 3pm. It will not be as long as last weeks and Colby/T will be running it! J
Sierra Hall: Sunday and Monday night duty RAs, please check in with Theresa
I will miss you all..
See you Tuesday
Enjoy your weekend/Monday!
Josh
September 12, 2008
Leaving for San Diego
On my Southwest flight to San Diego, I sat down next to an elderly couple. They cracked me up. They were reading a People magazine that they found in the front seat pocket in front of them. They were cracking up at the pictures of the crazy celebrities dressed in ridiculous outfits. I knew I sat next to the right people. We began to talk and laugh together about the printed materials.
Once the flight began, I pulled out a book that my friend Kevin Sullivan suggested I read – “Its Not About the Bike” by Lance Armstrong.
The woman sitting next to me put her hand on my hand and told me that Armstrong’s book helped her through the hardest time of her life. She began to tear up.
She informed me that she has breast cancer, twice – both breasts.
I informed her that I was going to San Diego to get a second opinion and explained what has happened to me. We cried on the plane.
Her husband talked to me and was very reassuring to me.
The woman then took off her Livestrong Bracelet.
She gave it to me and told me to wear it until my treatment was done.
She told me that she wore it throughout her treatment and she survived.
I was in shock.
I told her that I could not accept her bracelet.
She told me to take it and she hoped that it would give me the same luck it gave her.
I put it on.
We talked the entire trip.
After getting our luggage, I hugged her and hugged him.
We parted ways.
I don’t know their names, but I am so grateful for their conversation.
