My Cancer Journey
My lessons learned?
Challenge everything a doctor says and does, and get multiple opinions and get early scans at any cost - it will likely save your life. Had I done this and not trusted that my doctors had my best interest at heart to prevent disease and search for early signs of disease, this website would definitely not exist and I would still be on track for early retirement at 50. Now I will be extremely lucky to even make it to my 50th birthday.
There is a history of cancer in my family, especially on my mother's side. My mother had breast cancer in 2004 and after five years was given the clear that she had beat it. Then in early 2012 she was diagnosed with late Stage IV ovarian cancer. She finally lost her battle with ovarian cancer on January 28, 2013 after many years of braving the treatments that seemed to just keep her alive enough to try to keep fighting along her long and problematically painful terminal journey.
What angered me the most was that her doctors simply stopped scanning every year after she was cleared from breast cancer in 2008. The doctors didn't scan her for more than 3 years (2012) to see if the cancer had returned or was found in another part of her body. Had the doctors done their job and scanned more periodically, then they certainly would have found her ovarian cancer in a much earlier stage than late Stage IV with only 3-4 months to live. A simple periodic scan might have given her a better chance as a long-term survivor.
My mother's mother (my grandmother) died of breast cancer complications in 1989. Her complications arose from a broken arm and hip that would not heal, along with the medications at that time, which were worse than the cancer itself.
Some of the facts leading up to my cancer journey are on the left of this page. What follows is a retrospective over 3 years since my cancer diagnosis on October 1, 2015. This is done in an attempt to put into perspective any subtle symptoms that were exponentially getting worse over time and to identify them as warning signs that were missed by everyone, including the doctors.
I was diagnosed with varicoceles after a routine check up at my urologist. My urologist dismissed this as nothing to be worried about and simply directed that it be watched each year thereafter. It turned out that the only smart person in that clinic was the technician who performed a sonogram. During the sonogram procedure I asked a question about how many people get varicoceles. In passing, the technician commented that sometimes, this condition is caused by kidney cancer and complications with the renal vein that cause varicoceles. I asked him to show me my left kidney and it appeared to have scar tissue on it. I did not know what I was really looking for and there were no doctor's orders to image the kidneys, so the sonogram of my left kidney went undocumented and was never investigated further. Now I wish I could go back and get a CT scan of my abdomen and pelvis every 6 months after my diagnosis with varicoceles, which would have surely shown the early stages of Renal Cell Carcinoma and action could have been taken to take all of the cancer out before it grew unchecked for 3 more years and then metastasized to my brain and lungs. I ask you, do you really want to trust your doctor now?
Late 2013 to mid 2014
I look back now to late 2013 and I can clearly remember signs and episodes of distress at work an in my personal life, which never really happens to me.
At the beginning of January 2014 through May 2014, I can look back now and see a clear difference in my behavior and emotional state. It was a steady decline, albeit slight and unnoticed at the time, and caused a lot of stress at work and in my personal life. I was becoming less happy, which is a huge warning sign for me in general that things are not right.
So I abruptly quit my job one day in mid-May 2014, thinking that it was my career that was the cause. Thankfully, I found a new job almost the same week that would be a better fit, closer to home and with more flexible hours and workdays.
The rest of 2014 was spent actively working at my new job and also trying to acquire retirement property, which led me on a search through West Texas, New Mexico, Colorado and Wyoming.
By the fall of 2014, I thought I was doing well, but looking back I can clearly see more sparse episodes of distress, stress and emotional imbalance. I was struggling with my relationship with my girlfriend and I did not know why or what was the root cause of this dysfunction.
By late December 2014, I look back and started noticing more frequent episodes of stress, anxiety, distress, confusion and emotional problems that, at the time, I did not know how to make sense of it all.
From early January 2015 to April 2015 I look back and see a growing frequency and severity of symptoms with my function, emotions and interactions with people, places and things. This ultimately stemmed from the three growing brain lesions (one of which was rather aggressive and larger than the other two lesions), along with the growing edema in the brain.
My relationship with my girlfriend continued to suffer at my unstable and unpredictable emotions, functional interactions and communication. I started having a harder time at my new job, despite having hit my stride and integrating well at the company within my first six months.
Mid to Late 2015
Over the course of 3-4 months leading up to June 2015, I had a few chest pain incidents that started to alarm me. So on July 26, 2015 I had a heart calcium score scan performed to see if I was having signs of plaque or calcium in my heart's arteries. Fortunately, my heart calcium score was 0 (zero), which was fantastic news. Unfortunately, the scan reveals several nodules and nodes with the my lungs, the largest of which was about 2cm in my aortopulminary window.
The heart specialists sent the results to my general doctor with a recommendation to wait 3 months and then do a CT chest scan to see if there was growth. At the time, I was quite worried, but my doctor seemed to pass this off as something that was not of great concern at that time and agreed to simply order a 3-month follow up CT scan.
That 3-month follow-up CT scan never happened, because I started declining rapidly and exponentially at the beginning of August 2015 through September 2015.
By the end of September 2015, I had all kinds of symptoms, the worst of which was constant nausea and vomiting (I couldn't even keep water down for almost all of the last week of September 2015). I also experienced confusion, memory loss, imbalance in walking, trouble with details, hands and arms were shaking, loss of appetite, and extreme weight loss (I lost 31 lbs. between August 28, 2015 and September 30, 2015). I couldn't type on a computer keyboard (I have been typing 70+ wpm since I was 17 years old), could no longer play the piano (that freaked me out royally since piano was and is a large part of my life). I had trouble with stairs, trouble driving, was disoriented and even was having subtle hallucinations.
That led to emergency CT Scans and MRIs on October 1, 2015. I found out late that afternoon that I likely had Stage IV metastatic Renal Cell Carcinoma that had metastasized to my lungs and brain. The brain lesions were the main culprit for most of my symptoms, along with the out of control cancer in general spreading and growing throughout my body.
I was immediately hospitalized the next day on October 2, 2015. After finally being stabilized for 3 days, I underwent a left kidney biopsy on October 5, 2015 and then agreed to have an emergency craniotomy to remove the large 3.5cm lesion in the brain that was the cause of most of my symptoms and systemic dysfunction.
Thankfully, the craniotomy was a success and the 3.5cm lesion was removed without any complications. The lesion was immediately sent off for a full pathology report in conjunction with the biopsy from the left kidney. The pathology came back as expected, with some favorable news that this type of cancer was of the clear cell variant, which is 75% of the cases of kidney cancer. That meant there were likely more treatment options than with the other 25% of rare types of kidney cancer.
I spent the rest of October 2015 at home in recovery and trying to gain back some weight and strength. My weight at its lowest point was only 187 lbs. At 6 feet 5 inches and normally almost 228 lbs., that was a huge loss of weight and muscle in such a short time.
By November 12, 2015, I had finally decided on a course of treatment, which was TKI therapy medication and started treatment that same day. Side effects were minimal during the first cycle of treatment. Subsequent cycles into December 2015 proved more challenging with some of my symptoms being hypercalcemia, nausea, vomiting, loss of appetite, weight loss and lack of energy among many others related to the cancer and the TKI therapy medication.
I also started my alternative cancer treatments consisting of a special diet, nutrition, supplements, and oral and injectable immunotherapy medicine as part of an international clinical trial (all of which is at my expense). The sole purpose of my particular alternative cancer treatments is to support, boost and awaken my immune system in an effort to assist my body with fighting the cancer.
On January 8, 2016, I went in for some genetic testing to see why I was getting this type of cancer so young, roughly 20 years earlier than I should if I am predisposed to get it to begin with.
Results - Genetic Testing
Results from the genetic testing reveal that there are no issues or mutations across the 79 genes tested. There was a slight mutation on an obscure ATM gene (ATM Serine/Threonine Kinase - a Protein Coding gene), for which there is no current data.
On January 11 & 12, 2016, I had follow-up MRIs of my brain and CT scans of my chest, bones, abdomen and pelvis. This interval of scans and MRIs was to determine where I am with the TKI therapy treatment and what the cancer is doing in various parts of my body where it has already metastasized. The bone scan is an important checkpoint to ensure that no metasases have spread to my bones, which if this had occurred, would be a devastating blow to my recovery potential. The brain results are especially important since TKI therapy does not always cross the brain-blood barrier, so new or growing lesions in the brain is a worst case scneario for any chance of meaningful survival. If Gamma Knife Radiation has not reduced the two existing 4mm lesions, then this again could be a warning sign that radiation is not working.
Results - CT Scans and MRIs
TKI therapy has not worked, despite some improvement with pain while on the therapy. CT scans show that over the past 2 months the cancer has aggressively spread at a high levels in the left kidney mass, lungs, brain, and now across the body with hard nodules and growths — some as large as an acorn.
Unfortunately, this is terrible news and really is a set-back in shapes and forms with regards to treatment. There is only one drug left that is immunotherapy-based to try before there are no more options.
I had my first infusion of this newly FDA-approved immunotherapy drug back on January 19, 2016. Each cycle for infusion is every two weeks. Initially, the doctors have stated that it make take between 4-6 cycles or as much as 16 cycles to see any improvements. Given the highly aggressive nature of the spreading cancer, it does not appear that I have a luxurious number of cycles to deal with, so time is very important for tracking and monitoring quickly any noticeable benefits.
Follow-up CT scans are scheduled in usually 3-4 cycles (about 8 weeks) from the initial infusion. How I feel in between those 2-week cycles will also give considerable indications as to whether I am feeling any better than I did experiencing the previous symptoms of: hypercalcemia, nausea, vomiting, appetite loss, weight loss, high creatine levels and other related lab work.
Unfortunately, the MRI results were just as devastating. There were 3 new lesions, one is 1cm and the others have not yet been sized by the radiologist, but are at least 2mm or larger. The existing resection cavity where a 3.5cm lesion was removed on October 6, 2015 appears to have flared up again with noticeable edema. Edema is also present around every other lesion currently in the brain, whether or not they had been subjected to Gamma Knife Radiation treatments. The follow-up meeting with the neurosurgeon was on January 22, 2016. Gamma Knife Radiation will be performed on the new lesions found in my brain.
As of January 28, 2016, the last immunotherapy treatment option has not worked. Ironically, the anniversary of my mom's death in Hospice just 3 years ago is the date of my finding out there is nothing else that can be done. I am now on Home Hospice care for the remainder of my few short weeks left. I will be fighting hard to get as much of my original music recorded as possible so that old band members from the 80s and 90s can create an album in my memory after my death.
Entered home hospice care. Now I am just fighting the last battle with everything I have.