Life seems to always be full of surprises, some good, some not so good, but always with a surprise when we least expect it. Might be someone announcing a wedding, or someone just found out they are expecting, moving into a new house, buying a new car, many different types of surprises. The emotions can’t ever be planned, they just overwhelm you with joy, sometimes with sadness, especially those times when someone close to you unexpectedly leaves this world. It doesn’t soften the blow knowing that we are all on this planet for a short time, all we can do is to make the most of it while we are here, living life to the fullest, sharing it with others.
In 2011 I received positive results back from a prostate biopsy that indicated I had cancer of the prostate. At least this was sort of expected. Several years prior my primary doctor had been informing me that my counts had been inching up. Finally after a few years of repeating this warning message to me I asked about when this might lead to something and the doctor explained that eventually when this number arrived at about 9.5 or 10, it usually meant that this would result in a positive for cancer. But, he did let know that the numbers were just that, only an indicator of a problem, and that only a biopsy would reveal the truth. Once I received the news of the positive results I digested this over a few days, unsure of how I should handle the situation. Tacho and Megan had just gotten married in January of 2011 and then shortly thereafter letting us know they were expecting. Then soon after that, Nene let us know she and Edgar were getting married later on in 2011.
With that knowledge I had to keep this to myself figuring if I let anyone know of my situation it would be like taking the wind out of the sails and dampen everyone’s happiness. After consulting with various doctors about treatment I elected to go with a date for treatment that I thought would be safe enough past delivery date for Cruz in November of 2011. Except Cruz wasn’t ready to face the world yet. My procedure date was set for November 5th and his delivery date passed and that really tossed a wrench into plans. So I decided to make up a story about me having something contagious and that prevented me from being present for Cruz’ birth on the same date. It was really sad not being able to be there, then not being able to be around Cruz until several months after his birth as I had some radiation in me that might be harmful to a newborn. I was finally able to see and hold him a few months later and was glad that Mom and baby were healthy.
But then sometime around 2012 I began to notice that my counts had kept dropping and I asked the oncologist that treated me for the prostate cancer if this was normal and he just told me it was probably temporary and would be returning to normal within a year. But after a year the the counts continued to further decline and then I began to experience frequent infections as my immune system began to weaken from the lower counts. My VA doctor kept telling me it was nothing to worry about, my counts weren’t that low and she would keep an eye on me. I had always been a stickler for tracking my lab results on a spreadsheet and the numbers just kept popping out at me as an indicator that something wasn’t right. It wasn’t until 2016 that I finally decided to make an appointment with my Kaiser primary and talk to him about my concern over my low counts. He agreed and sent me out for a bunch of labs and referred me to Hematology to review the results. In September of 2016 I met with Oncologist Carolina Franco from Kaiser and with the initial lab results in front of her she indicated to me that her guess was that I had Multiple Myeloma but couldn’t be sure until she performed a bone marrow biopsy. In October of 2016 the results came back positive for MM.
In a way it was a bit of a relief, because at least now I knew what was causing my counts to keep on dropping, so no more mystery. With this type of illness, the bone marrow either isn’t working at all or is under-performing. The bone marrow is like a factory and it produces white and red cells, platelets, hemoglobin and other important things that are crucial to the immune system in the body. My Oncologist at Kaiser, Dr. Franco, felt this was early stage and could be attacked with chemo drugs and then if things went well, a stem cell transplant.
After initial chemo treatment for about six months, Dr. Franco thought my body responded well to the chemo and my body was ready for the stem cell transplant. Its not a given to everyone, the doctor has to feel that the patient is healthy enough to tolerate the transplant as it has its own risks that could be fatal with just enough bad luck getting an infection during the procedure. The transplant is in theory like a dead battery in the car getting a jump start from another car to get it work again properly and produce healthy cells. I began my process in May of 2017 and was finally done early part of June 2017. The the hard part began in recovery and remaining away from almost all contact while the body was at zero immunity as the transplant wiped everything out including any vaccinations from the past. Little by little I got out and took short walks in the park in the early morning to help build up oxygen levels since the body went through so much and weakened me quite a bit. Then in August of 2017 the transplant specialist began to prescribe Revlimid, a very expensive, but effective drug, in combating the cancerous cells in the body. It has the potential for a lot of strong side effects, but I was fortunate and only had few of them, none serious. The main negative side effect was that it has a tendency to lower the immune system even further as it also attacks the good cells while trying to attack the cancerous cells. So life as normal will never be the same as long as there is some risk of infection due to this treatment plan.
Then in May of 2018 Dr. Franco met with me to let me know the bad protein cells had grown a bit over the range they were supposed to be in and decided that she would need to change the medication and go with something fairly new, Darzalex, but proven also to be effective. It is given as an IV and lasts for about 5 to 6 hours once a week, then after a few months is spread out, but that schedule will be determined by the doctor depending how my body responds. So far no real negative side effects from this new therapy, and it has quite a few that can complicate things, so feel quite lucky again in dodging this bullet.
Life can never be the same again, so there is some adjusting to the new normal that is now my life. My bike riding days in the hills are now a thing of the past, I get pooped just riding a few miles around the city streets, maybe I can go about 5 miles before needing to shut it down. The gym I only see about 2 to 3 times a week and only for about a 1/2 hour workout but now the gym is totally out of the question as all gyms are a factory for germs, so I quit my membership to avoid further risk of infection. At least I can still go out hiking in the hills, except the hills are a lot bigger and steeper now forcing me to use trekking poles now on the uphill and taking lots of oxygen breaks and sucking on an oxygen bottle when I am out of breath. But at least I can still hike and get out bow hunting with Tacho and Cruz. As with any health trauma there is going to be a roller coaster of emotions that includes anxiety, some depression, lack of energy, sadness at not being to enjoy some things I used to enjoy doing but no longer can due to the risks of infections. And then there is the risk of Melanoma from over exposure to the sun. So no more working on my tan like I used to. But this is just part of the new normal. Being a part of a myeloma support group helps in finding out success stories and getting encouragement from other members and learning some things to help you ride out the storm. But most recently, meeting on a regular basis with a VA psychologist has helped the most in keeping me grounded and getting me through the roller coaster of emotions. We are going to be working on some programs (cognitive behavioral therapy) so this is all new but I am keeping an open mind to whatever she recommends for my mental well being to help see me though this with a positive attitude.
In early 2019, my oncologist took me off one medication (revlimid) I was on as it was not longer doing its job. This is a fairly common issue with multiple myeloma. The body seems to reject a drug after a year or two, then another drug needs to be introduced to keep things in check and from spreading. I was advised that they were going to give me a fairly new drug, Pomalyst, to see how this performed. It is a more potent drug, and with all these drugs used in chemotherapy/immunotherapy, there are a bunch of possible side effects. But the doctors will always tell you that the benefits outweigh the risk. I began the new treatment in February and it seemed that it was not going to be an issue, I was feeling fine. Then in early March I became quite sick with chills and a high fever. Turns out that I had pneumonia and had to be admitted to the hospital where I spent about 3 days receiving antibiotics through an IV. While in the hospital the RN told me that my counts were super low due to the new drug I was taking. Once out of the hospital I did some research and found out that with this drug I was supposed to have had lab work done every week, but this didn’t happen. So I was walking around with a super low immune system I didn’t know about and that is how I wound up getting pneumonia, just by being out in the cold weather while watching Cruz play ball in the late afternoon. After speaking with the medical rep from the manufacturer, (Celgene) I found that the dosage could be reduced if agreed upon by the doctor and patient. I had also found that the new drug did have some positive effect in two major areas so I decided that I would give this drug a another try but at half the dosage and with weekly lab work. Hoping this will work and the plan is to start the new treatment at end of May.
But the oncologist refused my request to try the smallest dosage, 1mg, and kept me on the 2mg dosage. Once again the Pomalyst took my immune system down into the zero category. I took off time to let my body recover but the office kept pushing me to restart the meds even though it put me a serious health risk.
Once I decided it was safe to begin again, on my own I cut the dosage in half, only taking the med every other day instead of daily. Initially it looked like this might do the trick, cut down on myeloma cells and not put me at risk again. But even at my own dosage the drug nevertheless took my immune system down into the zero range. It was during this time that I finally decided that I needed to switch doctors. Seems my oncologist and her staff were more concerned about me taking the med on a daily basis instead of being concerned about my well being. There were other issues but the high pressure sales pitch convinced me I needed to start over with someone new and at another facility. I first met with my new oncologist, Dr. Nguyen, at Anaheim Hills, in early August. He listened to everything I had to say and was very compassionate. He is willing to be more flexible in finding something that works and to stabilize the counts. At least I feel a lot better about the change, and feeling better is half the battle.
If this drug proves ineffective, there is another similar drug, Kyprolis, that is another option, same family but it may or may not have the same powerful side effect.
But I always keep one thing mind from one of my fellow support group members. When I first joined, he had to let me know that I wouldn’t die from the myeloma, that my demise would be from the drugs. Now I know what he was talking about and serves as a good warning for all future treatment plans.
I began using the Pomalyst but after a period of a few months, Dr. Nguyen saw it was not working like he had hoped and took me off it. In February of 2019 he began prescribing Kyprolis in conjuction with Cytoxan, a powerful chemo drug. Both can have powerful side effects so he has me on weekly lab tests and so far so good, no real nasty side effects and my counts seem to have stabilized. In September of 2020 he removed the Cytoxan just to see how my body responds and he will meet with me again in a few months to review my counts.
I was doing some small work at Nene’s and on one day I had to use a short step ladder. I had a screw driver in hand and just stepped onto the step ladder. Next thing I knew I woke up om the ground. I felt some wet stuff on my head and found it was blood. I figured out that somehow I had fallen, landing my head in the doorway in the back of the garage just barely missing hitting some bricks by inches. I walked to the front of the house and found Carol and she bandaged me up and sure I was okay before I went to urgent care. Tests didn’t show any further damage other than a nasty gash to the back of my head. After doing some digging I found that a rare side effect of Kyprolis is fainting. I had no idea I was going to faint, no warning, I just fell down. Scary drug. But the warning label says the Benefit outweighs the Risk. So I am still on it but now only every other week. Then I had another incident in November of 2020 that resulted in a fracture to my left arm. I was trying to loosen a stubborn bolt under the driver’s seat. As i gave the ratchet a good tug, I hears a loud crack and I knew right then I had a broken bone. I had major pain in my shoulder and some light headedness that scared me more than the bone breakage. Lucky it was a clean fracture and only needed a sling. The Myeloma can attack the bones and make them weaker and brittle. Another med I take is a steroid, Dexamethasone, which can also weaken the bones. I knew this and had already given up snowboarding, golfing and lifting weights, so I thought I was okay. Now I know better and rethink everything. But that is the risk with all drugs used in chemo, they all have side effects, some mild, some fatal.
Rios-Castillo Family History 