Report created by: Marii
Date: 11/26/2014 at 4:52 p.m.
Subject: Upcoming Appointments and Procedures
|Upcoming medical appointments and procedures for the week of December 1st through December 5th.(Mon - Fri)|
Monday 12/01 - 1130am to 1230pm Dr Bita Cancer Center for Hope Irvine (chemosensitivity test results and most recent blood work)
Tuesday 12/02 - 400pm to 530pm - Pulmonary function test UCI (tests the function of the lungs prior to chemo treatments)
- 715pm to 830pm - MRI UCI (to determine if there is any spread to Brain)
Wednesday 12/03 - 6am to 930am Pet Scan at UCI (to determine extent of latest cancer spread before chemo treatments, and check if any organs are involved)
Thursday 12/04 - 945am to 3pm Portacath Surgery (device inserted near chest inside the body for chemo drugs to be administered and all blood tests to be taken from, outpatient same day surgery)
Report created by: Marii
Date: 12/03/2014 at 01:05 a.m.
Subject: Chemotherapy starting next week...
|Hey Everyone, my chemotherapy is finally starting next week and below is the schedule for the first cycle of treatment, out of 4 total cycles. Each cycle lasts 21 days and repeats from the beginning every 3 weeks in the same order. The first week the chemo is given 5 days straight for 4 to 6 hours a day, he second week 1 day only for 2 hours, and week 3, 1 day only for 2 hours, then it starts back to 5 days and so on.|
Monday December 8th - 1st round of chemo 8am to 2pm
Tuesday - 2nd round of chemo, 8am to 2pm
Wednesday - 3rd roung of chemo, 8am to 2pm
Thursday - 4th round of chemo, 8am to 2pm.
Friday - 5th roung of chemo, 8am to 2pm.
Monday December 15th - 6th round of chemo, 230pm to 430pm
Monday December 23rd - 7th round of chemo, 2pm to 430pm
This is the end of cycle 1, I will post more later next week after starting.
Report created by: Marii
Date: 12/04/2014 at 3:18 p.m.
Subject: Surgery went well...
The surgery today took place around 1230 and it went very well. Portacath is installed which connects to the right internal jugular vein which runs a straight course to the right atrium and blood supply for the body.
Right after surgery
Portacath explanation: A portacath consists of a reservoir (the portal) and a tube (the catheter). The portal is implanted under the skin in the upper chest. It may appear as a bump under the skin in thin patients, less visible in patients with thicker subcutaneous fat. The catheter runs in a tunnel under the skin, going over the collar bone and then enters the large vein in the lower neck (the internal jugular vein). The septum of the portal is made of a special self-sealing silicone rubber. A portacath is an implanted venous access device for patients who need frequent or continuous administration of chemotherapy. Drugs used for chemotherapy are often toxic, and can damage skin, muscle tissue, and sometimes veins. They often need to be delivered into large central vein where the drugs are immediately diluted by blood stream and delivered efficiently to the entire body. Cancer patients also require frequent blood tests to monitor their treatments.
Report created by: Marii
Date: 12/08/2014 at 11:45 p.m.
Subject: Day One - 1140am
Today is the first day, came in about 745am, did some paperwork and blood work and just waiting to start the actual chemo treatment. They have to first give me hydration and anti nausea medications through the IV, before they start the chemo which is starting shortly. Feel fine so far and everyone is very attentive and nice. Looks like today we (Alexis and I) will be here till 530pm as the first day is the longest. Will try to give another update later tonight after I am back home.
Getting IV hydration
Report created by: Marii
Date: 12/10/2014 at 10:06 a.m.
Subject: Day 3 ....
|Today is day 3 of the 6 hour a day chemo. So far no major side effects except quite a bit of constipation due to nausea medications that are placed in my IV and a little more fatigue as the days go by. It is similar to a feeling of being hung over after a night of drinking. Two more days this week and then a short break on the weekend and back Monday. Biggest nuisance so far is the time sitting here from 8am to 2pm, otherwise the process itself is smooth and I don't feel anything while hooked up, which is great. Thank you everyone for your support, 3 more months and this should be all gone. |
Report created by: Marii
Date: 12/13/2014 at 2:35 p.m.
Subject: Day 6...
5 days of 6 hour chemo have passed, my first cycle out of four cycles is almost over. I have 2 more chemo sessions/days, this coming Monday, and the Monday after where they inject the most concentrated chemo called Bleomycin which is put in slowly using a syringe for about 2 hours. You can read more about it here, http://en.wikipedia.org/wiki/Bleomycin. It is the quickest chemo but also the strongest and most potent to fight the cancer cells.
Last night and today have been a little rougher as the chemo seems to be moving through my body especially my intestines and stomach. Bloating and cramping have been a constant feeling night after night, but it seems to get better now that I am having a day off finally. It is pretty unpredictable how I feel from one hour to the next as my body changes constantly how it feels. Hoping this next week is much better and Monday goes smoothly. I am thankful for Alexis being by my side and helping me with anything I need, it makes my recovery that much faster.
Report created by: Marii
Date: 12/16/2014 at 4:05 p.m.
Subject: Day 9 of 84 left to go...
Today is Day 9 of 84 left, seems like the last 3 days were the worst in terms of the side effects, the main one being the feeling of extreme fatigue and inability to move around or do anything. I was told that happens right after the chemo days, because you are no longer getting steroids put into an IV and left alone with the chemo drugs in your system.However, luckily today I woke up feeling normal and back to being able to do most things. It appears the rest of the week should turn out good and I should be able to function pretty well every day.
Here is the schedule of my next cycle, the 2nd of 4. Another hard 5 days are coming right around new year's eve!
12/22 - 1:00pm follow up with Nurse Practitioner
12/22 - 1:30pm Bleomycin
12/27 Saturday - day 1 800am - 2pm Cisplatin, Etoposide
12/28 Sunday- day 2 800am - 2pm Cisplatin, Etoposide
12/29 -800am - 2pm - day 3 Cisplatin, Etoposide
12/30 - 800am - 2pm - day 4 Cisplatin, Etoposide
12/31 - 800am - 2pm - day 5 Cisplatin, Etoposide
1/5 - 8:30am bleomycin
1/5 - follow up with Dr. Sender after chemo
1/12 - 8:30am bleomycin
Report created by: Marii
Date: 12/17/2014 at 08:19 a.m.
Subject: Day 10 of 84, Don't sweat the small things
|Today is Day 10 of 84. It is now officially 4 full days since the hardcore 6 hour chemo of cisplatin and etoposide, and 1 full day since the short bleomycin chemo.Most side effects come from the cisplatin and etoposide and thankfully over the last 4 days they have been slowly moving out of my system and I am feeling back to normal and am at 80% energy levels. Today feels fantastic, as if I never started chemo, and I am cashing in on feeling good as you never know how long that will last. I am catching up on work which I miss so much when I am down, as I love what I do and can't wait to put in some quality work hours in. I am very fortunate to have an extremely supportive and understanding company I work for who are doing everything they can to make my work easier and make me feel needed.We all take for granted some of our daily life including work as it becomes so routine, but I am here to tell you to be grateful every day you wake up and get to feel 100%, and enjoy every minute of that day, because you never know what the next day has in store for you. In my case, it is a 50/50 chance whether I can feel normal/functional as I feel today, or barely be able to get out of bed due to side effects that kick in randomly. So I am using every minute of this day to do something productive while feeling good and healthy. Don't sweat the small things that come your way, just move on and focus on the larger picture and ask yourself "Will this matter a year from now"?, that is what I tell myself every day and the answer is always "No" :)|
Report created by: Marii
Date: 12/22/2014 at 7:18 p.m.
Subject: Day 15 of 84
|This last week since Tuesday including the weekend, has so far been very light on the side effects. Fatigue went down considerably, along with some of the other earlier non pleasant side effects.|
Today was a Bleomycin day where they only apply one chemo to my system for about an hour, but I had to do complete blood work to monitor any significant changes in my white blood cells, red blood cell, platelets and other areas that are very critical before a chemo treatment. So I was stuck in the hospital for over 3 hours.
White blood cell count which is the most important in treatment, fell from 10.9 to 3.6 which is normal after 1 cycle of chemotherapy. It definitely makes me much more prone to catching a cold or something worse, so having to be more and more careful every day. If it falls under 1.5, that would be a cause for concern and possibly having to make changes to the chemotherapy regime or amount, as the body becomes completely defensless if it gets that low. So hopefully after the next 5 day cycle starting Sat through Wed night this coming weekend, it does not lower that number much more. The red blood cell count was 3.58, supposed to be over 4.5, but they said it is a normal reaction. Platelets count which is as important as the white blood cells is at 2.1 on a scale of 2 to 8.1. Even though it is very low, it is in the lower normal range, so at this point it is not an issue. These tests will be performed again Saturday morning, before start of the intensive 5 day 6 hour chemo to make sure I can handle it physically. If the platelets or red blood cell count drops much further, they would be performing a blood transfusion to increase the oxygen in my blood and prepare my body for the chemo treatment that ideally should never be stopped or interrupted even by 1 day due to the systematic way it treats cancer.
Other than that, it has been a great week so far. Some minor side effects that are not affecting my normal daily life as much are caused by the cisplatin drug, used in many chemotherapies. The side effects I have experienced this week are ringing in ears occasionally, frequent chills or feeling of being extremely cold which is caused by the low red blood cell count and low hemoglobin. It causes one to become mildly anemic. Body aches, lower energy, getting tired faster, muscle pains and just a worn out overall physical feeling is also caused by the low RBC.
Despite all these in my opinion "irrelevant and harmless", side effects which will become part of my treatment for the next 3 months, I have felt as good as I can feel these past few days considering the week before last. I actually look forward to my next 5 day cycle as tough as it would prove to be like the first time in terms of mostly extreme fatigue and feeling weak, because I would be half way cancer free! I can feel these treatments already working as the pain from the cancer swollen lymphs I had a month ago is completely gone which is a big relief and a great sign! The cancer is shrinking and shrinking fast! How much more can I ask for? So who cares about the side effects, when you know the treatment is working great. Also, my hair is completely intact to the nurse's surprise as they say that around days 10 to 14 is when it starts falling out. There is no sign of that happening with me yet so I am not concerned or worried about it at all, at least for now. They said they had 1 case/person and called it a medical miracle in the last 15 years with my specific chemo schedule and drugs, where the person's hair never fell out. 1 of many thousands, but I am shooting to be #2 on that list. Time will tell!
I will write more this weekend.
Report created by: Marii
Date: 12/28/2014 at 2:31 p.m.
Subject: Day 21 of 84
|Today is the first day of my 2nd cycle that will last 21 days as well. Today is also the first day that I finally had to give in and shave my head completely. It has been falling out rapidly in the last 3 days and this had to be done. I'm not in love with my new look yet but I am sure with time I will get there. Today and yesterday have been dreadful as I've had to do my chemo in the hospital instead of the normal infusion center, but being that it is a weekend they had to put me here. Usually I am in around 8am and out no later than 2pm, but here after getting in at 8am I couldn't leave till 700pm yesterday, and am not even allowed to leave the premises as I'm technically admitted in the hospital as an in-patient. Then they take twice as long to prepare the chemo and administer it, so expecting another long day today. I did sneak out for 2 hours earlier and was able to grab lunch and get some fresh air, and felt like I was on the run. Not the best way to spend a weekend especially after the holidays. Now the great news!! They checked my HCG tumor marker which is the main one used in testicular cancer and before I started treatment it had gotten as high as 325,000 and its supposed to be under a 100. So the tests from yesterday showed it dropping down to 2500 after just my first cycle! The Dr and charge nurse were very happy and said that is one of the best outcomes they've seen so soon. So the treatment is working really well and a full recovery is expected within the next 3 months, towards the end of March after the final scans are done. Side effects have so far stayed the same, and hopefully they continue the same way which has allowed me to function normal for at least two of the three weeks of the treatment. Working has been fine when I am not getting treatment or experiencing the extra strong fatigue. For every 3 weeks, I miss about 1 full week of work. So 1 week off of every cycle which I consider great as my expectations were worse. Luckily in the 2 weeks I do work I am able to almost fully make up the week I miss and there is no better feeling than that. I have 3 more days of 6 hour chemo left after today and then starting again a week from Monday for a 2 hour chemo and then the monday after 2 hour chemo again. Then cycle 3 starting with the 5 day chemo and repeat all over again.|
Report created by: Marii
Date: 12/31/2014 at 09:47 a.m.
Subject: Day 24 - A special Blog worth reading if you have the time...
Today is the 5th day of my 2nd cycle of chemo of the 6 hour treatment in the UCI infusion center. All the "fun" side effects usually start today and last for about 2-3 more days, especially the persistent fatigue as the chemo lasts in the body for 48 hours post the treatment, but you are not being given the help of anti nausea and steroid medications through an IV that counter the effects once you are home. It will be a fun new years eve! On a different note, and if you have time to read this rather longer blog than usual, I'd like to share some recent experiences and revelations that have come out of them. Some of you may know about them, and some of you will be hearing this for the first time. About 2 months ago, at the beginning of October, before finalizing my decision on starting aggressive chemotherapy for my condition, I made a decision to visit a place in Brazil, called Abadania, where a person by the name of Joao De Deus, or mostly known in the US as John of God, lives and touches the lives of over 2000 people, 3 days a week, every week for the past 60 years. He has the unique ability to trance channel dozens of passed away famous great Brazilian physicians. Trance Channel simply means giving up your body for several hours a day to let higher spirits and beings use it. Keep reading please, whether you believe or not, it doesn't matter, that is not the point, but the end result is what makes all the difference. If you google John of God, you will have hours of reading material as well as some unique youtube videos, some rather graphic but absolutely real, I witnessed them with my own eyes. I spent 2 weeks there by myself with a guide and a small group of people seeking various miracles. I waited in line with 1500 other people 3 days a week for hours, just to see John of God for literally 5 seconds and hope for a miracle healing. I spent 6 straight hours a day several days a week meditating with my eyes closed the whole time along with dozens of others, sending my energy to help the thousands coming in seeking a miracle. While there, the entire 2 weeks, I never felt better or healthier, in fact I believed I was healed. What I witnessed are people getting healed from all types of diseases, including paralysis, blindness, and many other permanent disabilities right in front of me. What I realized is that what I carried, the physical illness called cancer, was truly nothing compared to the other 1499 people next to me in line. Whether they had a life altering physical condition, or suffered from depression, or were lost and looking for their life purpose, all had a condition that had affected them for many, many years, and would likely continue to affect them for many more. It may sound trivial that something as simple as depression or trying to find one's purpose cannot possibly be as serious as being diagnosed with cancer, but it made me realize that there is a treatment for my cancer, that lasts a certain number of months, has its up and downs, side effects, whether temporary or permanent, and then it is gone and removed from my body and I get to go back to my normal life. Treatment for all these other people I met and saw, is not so easy, and unless a miracle happens there for them, then it makes their healing process much, much longer and more grueling than mine. I cannot speak for everyone that has been diagnosed with cancer, as some treatments last much longer and some don't work at all, but in my case I can say I am extremely lucky and fortunate. I felt like writing this because it is so easy to get lost in your own emotions, and feelings of self pity, and the constant questions someone in my shoes asks themselves, of, why me, why now, I never imagined this, what did I possibly do to deserve this and so on. What I have gone through in the last 6 months, and am going through right now is literally nothing compared to so many people suffering and having no hope or no light at the end of their tunnel of physical illness or circumstances out of their control. Just a few examples, if you take a hungry child, a homeless person with a mental disability, an elderly person who has Alzheimer, a child that has been diagnosed with cancer or autism without anything they could have done to cause that, and having to make sense of it at such a young age. All those people/cases are where real suffering and years of struggling make my diagnosis of cancer seem like the smallest challenge in life. I've gone through Bankruptcy many years ago due to losing a job as my company i was at for 4 years completely shut down. Because of that I lost my first home that I bought after working so hard for years, lost my father around the same time, lost everything I owned and was unemployed for a while. Those years/times I can tell you were much harder than what I am going through now, because I had lost hope and lost everything. There is truly no worse feeling of the feeling of hopelessness. When I came back from Brazil, feeling 100% healed and excited on October 19th of this year, I never imagined that 2 weeks later I would wake up in excruciating pain just to find out my cancer had spread 6x more in all my lower lymph nodes and I had little time to take action, or my fate of possibly dying would be sealed. Was I confused and disappointed that John of God did not heal me, yes I was. It took me sometime to realize that some lessons in life are meant to be experienced as unpleasant as they are, and there are no shortcuts. However, I also realized that a much greater healing had taken place in Brazil, and that was my spiritual and emotional healing was complete, and I was just left to fix the physical problem that I am fixing now. The lesson here at least for me, is just like many old sayings where a person travels thousands of miles, meets hundreds of people searching for a specific answer or goal in mind, but ends up getting in return something completely different that actually makes the original goal just the beginning. When you make your new years resolutions, think about adding something new and different. Instead of the usual losing weight, making more money, being a better person, try making a goal of helping someone less fortunate than you and mentoring them or seeing that they get the help or guidance they need. I have found personally that there is no greater pleasure in making another person's life better, no matter how bad your life or situation could seem, or how busy life can be. Don't let another year just fly by without making a difference in someone's life. I will finish this long blog with a quote I like. Mark Twain once said: "The two most important days in your life are the day you are born, and the day you find out why." I can say with confidence, I am getting much closer to finding out why :). Happy New Year and please have a drink for me and if you read this whole blog, thank you for doing that and taking the time out of your busy life. If you like what you read, feel free to share it with anyone that you think can get something out of it. I've decided to make my blogs here public as there is no secrets here and only knowledge, ideas and experiences that may just possibly affect someone's life in a better way.
Report created by: Marii
Date: 01/12/2015 at 4:55 p.m.
Subject: Day 36 of 84
Today is day 36 of 84, the last day of chemo for my 2nd cycle of 3 weeks. Next Monday, January 19th, my 3rd of 4 cycles starts with 5 day straight chemo sessions from 800am to 2pm Mon through Friday of next week. The first week of every cycle is the hardest, especially the 3 days following the 5 days, so the Sat, Sun and Mon after due to the fatigue that sets in from the chemo drugs. However, these last 2 weeks have been great, I've felt really good, eating really well - great appetite. Last weekend I decided to go "wig" shopping and actually found one that looks pretty decent and is a nice change up from the beanies, especially for weekends. Photo attached. Otherwise, no other chemo side effects yet, everything I've experienced has been to a minimum of all the side effects listed with the chemo. Of course, when the 5 days chemo is going,all the side effects kick in for 7-8 straight days, but that is not bad at all out of 21 days treatment. That is only 33% of the time, so I have no issue having bad side effects for a 3rd of my treatment!
Report created by: Marii
Date: 01/19/2015 at 10:53 a.m.
Subject: Day 42...half way there...6 weeks left
Today is day 42, or the start of my 3rd cycle that will last 3 weeks. This week is the hardest as starting today I have to do 5 straight days of chemo from 8am till 130-200pm through Friday. Then only Monday next week, and the Monday the week after, and then 1 more cycle left repeating the same. The great news today is that my HCG tumor marker that started at 325,000, then dropped to 2500 after my first cycle, is now down to only 64, and the goal of course is to be under 5, which is considered normal and cancer free. So I am almost there and the markers are moving down at lightening speeds. Last weekend, my older dog, Lady, who is 13 years old, a Lab/Boxer/Ridgeback mix, had surgery herself removing her own cancerous cyst from her right front leg. Luckily for her it is only localized, and a low grade tumor that does not spread and is now completely gone, so she doesn't have to do any other treatments, just slowly recover from the operation over the next few weeks as she has about a 5 inch cut with stitches. It just shows you that cancer can show up anywhere, anytime, with anyone, even dogs. If you have a bad day or wake up feeling down or off, just remember you never know what news you can suddenly get about someone you know. Be very grateful you have your health, everything else can be easily changed by adjusting your attitude and point of view. Take a look a the picture for today's blog. My cancer journey is almost over, almost a year later, and I couldn't be any more grateful or lucky that my treatment has been so successful, and even with the side effects, one of the most rewarding experiences in my life.
Report created by: Marii
Date: 01/26/2015 at 5:40 p.m.
Subject: The chemo finally kicked my rear...
|So last week, I had the start of my 3rd cycle of 5 day chemo, between Mon and Fri, from 8am till 2pm. Usually the 2 days after the 5 days is over, I am pretty useless due to the fatigue setting in and the chemo itself making its way through my body without any IV's to help relieve the discomfort. By the 2nd day afternoon I am usually back to normal. Not this time around, the chemo really finally did a number on me and parked me between the couch and bed all of Saturday, Sunday and still disabling me today. Saturday night I had severe dehydration, it was very difficult for me to keep drinking water while my body was overheating, and by the evening it had me so worn out that I was becoming disoriented, sweating profusely, and minutes away from completely passing out. Luckily I regained some consciousness back and Alexis did not have to drive me to the ER which she was seconds away from doing. That was by far the scariest time of the chemo so far. All day yesterday and most of today, I have been dragging around like a ghost as my body is still trying to recover from last week's chemo and this weekend's ordeal. The nurses did warn me in the beginning that as the cycles go on, the effects get worse, but I never imagined to feel this helpless phyically. In 2 weeks I have my 4th and final 5 day chemo and can honestly say, absolutely not looking forward to it. The feeling of not being able to move, to think, to even try and drink a glass of water, is not fun and having it last days rather than hours makes you realize what chemotherapy really does to one's body. Yes it has killed most of the cancer by now, that is a fact, but it is also killing everything in its path as it can't differentiate. I am grareful, yet exhausted. The bright side, is that I am almost at the finish line, 5 more weeks and 1 more week of this 5 day torture, and this should be all a thing of the past. The treatment officially ends March 3rd, and then there is a waiting period of 30 days before the final scans/tests are done to show the cancer is gone for good. |
Report created by: Marii
Date: 02/02/2015 at 3:17 p.m.
Subject: Someone not as fortunate as me...
|Today was the last day of my 3rd cycle of chemo. I get a break till next Monday when my last 3 week cycle starts, with a hard push of 5 days/6 hour chemo Monday through Friday, and then Mon, and the Mon after again. I can definitely feel this 3rd cycle wearing down my body as I am feeling more tired/wiped out, and it is harder to bounce back. I am also having muscle aches and pains in my legs as if I took one of Alexis's hardcore boot camps or personal training sessions, that type of soreness, but I haven't (lucky me) :). I met another cancer patient today, a woman in her mid-late 30's sitting next to me in the infusion center of UCI, who was just diagnosed with stage III pancreatic cancer and given 3 months to 1 year to live. It was her very first day in the infusion center, and she was visibly shaken. You can still see the shock on her face from her diagnosis. We talked the whole time I was there, I gave her all the information and knowledge I could from my trial and errors with alternative medicine, European treatments, and current treatment, and she slowly started smiling and feeling a little more optimistic. I was glad to give her everything I know and have experienced, and it did make a difference for her, but it shows you how different cancer diagnosis are, and how lucky some of us like myself are. The ability to get proper treatment, have the cancer respond, and actually have a due date of when I will be cancer free. It might sound silly to a healthy person, but every cancer diagnosis comes with either a treatment end date, or amount of time left for that person to be alive, since treatment will not cure the cancer, but stall it instead. I am certain this woman will probably live for years, and the diagnosis she was given was just the Dr's opinion, but I cannot imagine personally what it feels to be told there is no resolution, only maintenance. So fair to say, with everything I am going through because of my treatments, it is really a drop in the ocean of how much different it could have turned out. When I was first diagnosed, like most people, I was asking the question of "why me, why now, what happened?", and had mixed emotions from anger to frustration, but now, I am saying to myself something completely different. "I am so darn lucky, blessed, and fortunate to be getting chemotherapy that works and allows me to live at least another 50 years". My advice for anyone that may be diagnosed or knows anyone going through this, is to not hate and be angry with the cancer, don't waste negative emotions and feelings and allow it to thrive off of that, but instead, embrace it, love it, work with it, and set it free when the time comes.|
Report created by: Marii
Date: 02/08/2015 at 3:43 p.m.
Subject: Cycle 4 - the final chapter of my treatment..
|The 4th and final cycle of my chemotherapy treatment starts tomorrow. It will last 3 weeks, with the first 5 days getting the most intense treatment of chemo from 8am till 2pm Mon through Fri, and then 2 hours the Mon after, and 2 more hours the Mon following that, for a total of 3 weeks. To be brutally honest, even though I am extremely excited and anxious to finish this treatment, I am not looking forward to the next 3 weeks as the final cycle of any cancer treatment is usually the hardest one with all the side effects trickling in. Hopefully this time with enough hydration, rest and patience, it will go by quickly and prove me wrong. I was lucky enough during my 2nd cycle to have a private room with a door during my 5 day treatment, where I was able to work and make business calls as if I was at my office. It worked out great as during the treatment, I actually don't notice much of the side effects at all, it is after the treatment and the later hours in the day that the side effects start kicking in. So I am crossing my fingers I get lucky enough to have a room, even if it is at least for a day or two. Working keeps my mind off the noisy IV stand/machines with all the chemo and hydration running through it. I am also somewhat of a workaholic, and very little can stop me from doing what I love. Some exciting news I am looking forward to tomorow, is my latest blood work from this last Friday, that will show my latest tumor markers. They started at 350,000 in December, dropped to only 64 just weeks ago before my 3rd cycle, and really hoping they are now below 5 (the normal cancer free range), which would be one indication the cancer is exterminated. The tumor marker in my case is called HCG. Of course I need to wait 30 days after this 4th cycle is done to do final blood work and CT scans to have the final news, but the tumor markers is 90% of the battle. |
Report created by: Marii
Date: 02/23/2015 at 9:43 p.m.
Subject: Day 84 of 84! Last day of chemo...
|Today was day 84 of 84 days of treatment with chemotherapy. I had my last chemo this morning and could not be happier to stop putting that in my body. Even though I am finished with treatment, the wait continues, as I have to wait 6 weeks till the end of March to have my final blood work and pet/ct scans done to determine if the cancer has left my lymph nodes for good. The prognosis is great, the Dr is 85% certain I will not need additional treatment. My tumor markers are almost normal as of today, but the Dr said that is only half the answer, as many times they can be normal after treatment but the scan can paint a completely different picture. The additional treatment consists of surgery, or the retroperitoneal lymph node dissection (removal), which is a very complex surgery that I have been trying to avoid since last August. It involves a 3 month bed rest recovery as those lymph nodes are placed near the spine and can only be accessed through the front of the body, but I won't get into more details as there is nothing fun about it. So in 6 weeks or the end of March, this hopefully is not necessary and I can officially say that I am in remission. I am just glad the chemo is over as the side effects were not only getting worse in affecting me, but also lasting longer and longer. My body will be processing the left over chemo for the next 6 weeks at least, but hopefully without many of the bad side effects, while still limiting my ability to do too much in terms of physical exercise. One of the drugs called bleomycin, does a number on the lungs and I can be out of breath after a matter of jogging just a few hundred feet. Lance Amstrong refused to have bleomycin for the same reasons, as it would have completely ended his cycling career due to the permanent damage it could do. Slow but steady improvement is the plan in every area. And a big celebration around the corner in just 6 weeks!!! |
Report created by: Marii
Date: 04/15/2015 at 10:08 p.m.
Subject: 4 months of Chemo is over...what happens next...
|I had my follow up meeting with my Dr just last week. I usually have blood pressure of about 120/75, and when the nurse came in to take my vitals, it was at 150/95. A little anxious to say the least. Dr was late, about 30 mins, and when he came in, he neither looked excited or worried. My anxiety was growing by the minute. He finally said that my blood work look great and all the tumor markers had returned to normal. I could not get excited yet, as it seemed something was making him feel uneasy. He then said that we had a little problem with the scans, while still trying to locate them on his computer. Without going into too much medical terminology, the basis of what he told me, is that some of the lymph nodes that were affected and were supposed to shrink with the treatment, did not shrink as expected. Treatment is considered successfull when the nodes are under 1cm, and in my case one of them is 3cm. That means there is still residual disease there, but it is unknown if the residual mass is malignant. The automatic textbook protocol when a person's blood markers have returned to normal, but their lymph nodes are still enlarged is to right away have an extremely invasive surgery to remove them, called "Retroperitoneal lymph node dissection (RPLND) ". It is what I have been trying to avoid since I was diagnosed 1 year ago. The surgery is very complicated, only performed by a handful of Urology surgeons, and carries a number of side affects that most patients end up with due to the proximity of these lymph nodes to the reproductive system and nervous system. They are located behind all the main organs, and an incision is made from the chest area, all the way past the belly button. Then all organs in the area are temporarily removed and placed aside, while the surgeon tries his best to locate the lymph nodes and remove them with the least amount of damage to surrounding nerves. I will spare the additional details of the side effects, but if you are curious to know more, you can visit this web site. You can copy and paste this link: http://tcrc.acor.org/rplnd.html. It gives a pretty good, brief idea of the surgery, complications, side effects, and recovery time. If you do end up on the web site, for your reference I was Stage II-III nonseminoma, as it describes a few types. After a bit of negotiation with my Dr, he said that since my blood work at least looked good, I can afford to wait and do another follow up scan and blood work in 6 weeks, and see if those lymph nodes have changed in size, and if my tumor markers have changed as well. That will determine what happens next. At this point, it is truly a 50/50 chance, but while I wait I am doing everything I can in my power to flush the lymphatic system, detox the lymph and make sure it is functioning as well as possible to flush out whatever is keeping those lymph nodes at 3cm. You might wonder how someone flushes or detoxes their lymphatic system. What I am doing is good for anyone to do, to cleanse their body of toxins that are built up from every day life. I am doing 40 minutes of infrared sauna every day (http://www.sunlighten.com/infrared-sauna-health-benefits.html), jumping/rebounding on a professional health grade trampoline for 20 mins a day, that actually is used in many cancer centers as it is the only way to open and close the openings/valves in the lymphatic system (https://www.wellbeingjournal.com/rebounding-good-for-the-lymph-system/), and also using a unique Japanese machine created after 38 years of research called "The Chi" which oxygenates the body like no other exercise and cancer can't survive in an oxygenated environment, (http://www.chimachine4u.com/chimachine.html), and most importantly drinking 5 -16oz fresh, cold pressed, green juices a day from a great place called "Pressed Juicery", located at fashion island, Newport beach (https://www.pressedjuicery.com/about/). |
I am providing you all the links and information, because the things I am doing and will be doing daily for the next 6 weeks, are not only very important for me to give myself the best chance of avoiding surgery and cleansing my lymph, but they are also excellent for anyone to do at least once a week.
This is for now, all I can say is that I need all the prayers and luck in the world right now to finish this battle, and get those lymph nodes to shrink and let this disease leave me alone once and for all. Cancer is unpredictable, treatment success is unpredictable, and statistics are only good for the Dr's. This is the 2nd time in a year, that I was told before treatment that I had an 85% probability of being cancer free, once after my surgery last year, and the 2nd before I started chemotherapy, the exact same odds, and both times I ended up in the 15% on the other end. It is time for me to be in the 85% side, and I am determined to do whatever I can in my power to give myself the best chance of achieving that. I will update you again once I have my updated blood work and scans back and next time this blog will all be good news :)
Report created by: Marii
Date: 06/17/2015 at 11:06 a.m.
Subject: 4 months after chemo - update
|4 months after chemo - update|
To review since last update as it has been a little bif of time: So it has been 4 months after I finished chemotherapy at the end of February, did a follow up CT/PET scan at the end of April and my oncologist had to give me the good and bad news at the same time. The good news was that my blood work was excellent and the chemo did it's job in killing the cancer, but the scans still showed residual tumor masses which could be necrosis (dead cancer) or could be a new cancer called teratoma that tends to grow very slowly and it is almost impossible to detect. It never shows up in blood work alone. The ratios are as follows: 40% necrosis, 40% teratoma, 20% same cancer still lingering (but the 20% would show up on any follow up blood work). The option is to do a lymph node dissection surgery as I had explained in my previous blog, that carries many permanent unpleasant side effects along with many risks while in surgery as it can be anywhere from 6 to 20 hours. A decision was made to do a new scan 2.5 months later (which was just done this Monday) and see where the tumors are at size wise. We just met with the Urology Surgeon yesterday to discuss the new findings and there were again some good and bad news at the same time. The good news is that the tumors have shrunk, in just the 2.5 months since the last scan which is not common, meaning quite a few of the things I have been doing to cleanse my lymphatic system seem to be somewhat effective so far (colonic irrigation, infrared sauna, rebounder jumping, green juice juicing, and many other supplements). The bad news is that it is not significant enough of change to have the Dr's jump up and down in excitement and they are still recommending surgery. No change or small change in the tumors is good news to me, as it beats having the tumors grow larger which would indicate remaining cancer and immediate surgery. My decision at this point is to continue monitoring and of course do blood work once a month, and CT scans every 2.5 months to see how they are changing. My next scan will be scheduled for the end of August, with results coming at the beginning of September. The hope and goal is for the tumors to continue shrinking, to a point where they are under 1cm (they were at 3cm and went down to 2.6cm in 2.5 months already), which could take up to a year to achieve. At that point, the Dr's would be much more confident and comfortable to legally say that what is remaining is mostly necrosis, also called fibrosis or scar tissue from the chemotherapy and dead cancer cells.
Two Urologists I saw, (out of 4 in the last month), have hinted they believe if they do the surgery, what they will take out is just dead cancer cells/scar tissue, and not teratoma or remaining cancer, but of course they cannot be certain as there is no known blood test or abdomen scan that can predict that, and it is impossible to biopsy the tumors as they are in the lymph.
I will keep everyone posted as much as I can, but for the time being, I am continuing my quest on shrinking the tumors further, utilizing the same routine I have been doing for the last 2 months to shrink them almost half a centimeter so far. It is quite time consuming to do everything I have to do on a daily basis, and not very cost friendly either, but it definitely beats the alternative of permanent serious damage to my organs/nerves/body and potential serious surgery complications. I am very open and welcome any thoughts and ideas of anyone that knows of any additional ways of shrinking fibrotic tumors in the lymph nodes, or anyone that has heard of someone in a similar situation. I've done extensive research and believe am doing as much as I can to shrink them naturally, but ideas and thoughts are always welcome.
Thank you for all your support, it has been over a year now (March 2014), that I have been going through this and it definitely can get exhausting in many ways, but staying alive and healthy and retaining my body and organs the way they are meant to be as not meant to be easy work, when someone is dealing with such a horrible disease. The end of this is coming closer and closer, and I can't wait for it to be over, but patience and hard work have to continue to be able to gain the fruitful results of a safe and normal recovery back to how I was before March 2014.
Report created by: Marii
Date: 06/18/2015 at 11:15 a.m.
Subject: Surprise Update
|First of all, thank you to everyone who replied back to my previous blog update with positive thoughts and prayers my way. Having everyone think the best outcome and send that energy my way, helps my healing and recovery process in more ways that you can imagine. Each of you give me strength in different ways. I am very grateful and appreciative of you taking the time to see my progress and reply.|
I know I just updated everyone yesterday on my meeting with the Urology Surgeon, but we had another appointment scheduled with my actual Oncologist this morning and did not think we will get much different news that we already received from the Urology Surgeon. HOWEVER, against all odds and opinions we have been given so far by 4 different Urologist, my Oncologist who has been my primary Dr for the past 8 months, had just the opposite thoughts. He said the progress in the last 3 months is great, the fact that the biggest tumor turned into a cystic tumor (meaning it is now full of fluid and no longer a hard mass or a threat at all), and that both other tumors shrunk is a great sign and just shows that the odds of the tumors being just dead scar tissue are getting higher. He also said that even though I had some of the highest tumor markers he had seen prior to starting chemotherapy, I did not have extensive disease (spreading into other organs), which is very rare, and with how well I responded to the chemotherapy after the only the first cycle, is another indication that the cancer should be completely gone and we are only dealing with scar tissue. He travels internationally every month to meet with Dr's around the world on cancer care and treatment, which gives him a much more open minded approach and debate, and said that we need to definitely wait and that I am not a candidate for surgery at this time, as it is not necessary with the progress I am showing. I have another scan in 3 months and will be doing continuous blood work every month, but at this time odds are the tumors will continue shrinking or turn cystic which will be even better. Long story short - it appears the end of this is closer than I thought yesterday. It could be months instead of years before I know it is over once and for all.
I am sending this update, as hearing this from my Oncologist who knows all the details of my case from day one and knows the best course of treatment, was the biggest relief and the best news I have gotten since I started chemotherapy last November. The news should get better and better in the coming months.
Now, if you excuse me, it is time to celebrate! :)
Report created by: Marii
Date: 10/01/2015 at 4:41 p.m.
Subject: 3 month update / 6 months after Chemotherapy
|This week I had my 3rd CT scan since the end of my Chemotherapy at the end of February. The first scan (in March), showed multiple tumors still hanging on in the lymphatic system in my lower back area (called the retroperitoneal lymph nodes). I was told there is exactly a 50/50 probability based on statistics I may have remaining cancer called Teratoma, which is undetectable by any blood tests, but only CT scans. Surgery was recommended to remove them to be on the safe side, BUT, was informed of about half a dozen serious physical side affects and possible disabilities that I may incur during surgery and that it is a very high risk surgery that is rarely performed. After speaking with my Oncologist and several Urology surgeons, they said that everyone in my case does the surgery and lives with the side affects. However, with the help of my Oncologist who does not believe in generalized statistics of why surgery has to be performed when there is no confirmation of remaining disease, we decided to monitor the tumors and hope they continue shrinking, instead of getting larger which will immediately indicate more cancer. I am the only patient in a long time he has that has opted for surveillance instead of immediate surgery. 3 months later in July, I had my 2nd follow up scan (as I have to have them every 3 months now), and to everyone's surprise the largest tumor had become cystic (liquid filled), which means it was not a hard mass and it is no longer a threat, and the other 3 shrunk in size by a small amount but enough to make a difference. My Dr was very happy. |
3 months later (this week), I had my 3rd follow up CT scan, and once again the remaining 3 tumors have again shrunk in size a little bit more. They are still too large to be considered benign at this point, but the fact that they are shrinking is the best outcome in my case. So that is great news and it brings me that much closer to feeling that the cancer is gone for good and what is left over is only scar tissue and not active tumors (teratoma). It will most likely take at least 2 more scans (January and March of 2016) to be more certain and to get closer to calling this a remission. March of 2016 will also be the 1 year mark of the end of my Chemotherapy treatments, and usually most recurrences happen within the first 12 months after treatment. My oncologist was so relieved with the results, that he is now finally allowing me to remove my "port" (a small disc with a catheter connected to a large vein in the neck for chemotherapy use). He no longer feels I will need it, and he is also allowing me to do my blood work follow up every 3 months instead of monthly which I have been doing till now. Removing the port is a big step in putting all this behind.
So the news in the last 6 months has been getting better and better, and myself and my Oncologist could not be happier with the outcome so far, it is the best we could have hoped for. I have mentioned in my previous blog about some alternative cleansing activities I have been doing that may have helped the process in terms of keeping the lymphatic system at its peak, but of course it is impossible to prove. They include Infra red sauna, rebounding on a special trampoline created for cancer patients mostly, and recently over the last 3 months drinking 32oz a day of straight cold pressed organic carrot juice. There are many unofficially documented cases of people shrinking tumors with carrot juice alone due to a specific ingredient called falcarinol, which is contained in carrots and has been medically tested to curb cancer risk, as per webmd.com. Whether it is the carrots, or any of the above or simply just nature, the tumors are shrinking at a pretty fast pace which is unusual as it usually takes years for those types of outcomes. Something is definitely working and the progress is excellent. I am sticking to my routines for now, and I will update everyone again in January after my next CT scan.
Thank you for all your support and confidence in my choices of treatment.
Report created by: Marii
Date: 10/26/2015 at 6:48 p.m.
Subject: The Chemo Port is out! What's next...
|Last Thursday I had my minor surgery to remove the chemo port that was inserted above my chest almost a year ago. I've had that plastic device with a tube that connected to my large vein for a year, feels great to finally have it out and not worry about bumping and hitting all the time. This marks a milestone in the recovery process and definitely gets me 90% closer to complete recovery and a cancer free prognosis. My energy levels are back to normal, my weight is back to normal too, and I am renewing my gym membership to get back into shape and back to where I was a year a half ago. The only things left are the minor tumors that are continuing the shrink (another scan in January), a pile of some medical bills/debt that I am making a goal to pay off before my next CT scan, and fertility coming back. The fertility damage from the chemotherapy is probably the biggest blow to this whole thing, but we are hoping that it will return any day now. I've asked for some spiritual help just recently from my friends in Brazil and John of God, and they are currently working on my request. Sooner or later it will be granted, just a matter of patience, faith and confidence. On another subject, it never fails when opening the mail box every day to stumble across a new bill from some medical office from a visit over 6 months ago, that is just now deciding to surprise me with what the insurance did not cover, and amazingly the list gets longer and longer. I already pay nearly $1000 monthly for the best available health insurance in the country and one would wonder why I would keep getting billed but it happens. Most important thing is that I am physically back to where I was, and of course that matters most, everything else is secondary and a drop in the ocean. Another area I've learned a valuable lesson is in the area of stress, and from all the research and reading I've done, I can confidently say that in my personal opinion, the largest cause of any disease including cancer for an everyday person (that is not specifically exposed to certain risk factors), is stress. Whether personal, financial or work related, it is very dangerous. I am fortunate and lucky to not have any stress at all in my personal life due to an amazing wife, family and friends. Financially it can creep up here and there but it is always something than can be resolved with time so no need for prolonged stress, and work wise it can definitely get to you if you let it. I love what I do and I am very good at it which is a plus, and for the most part have been able to keep stress away from my daily work life, except of course when it is out of your control and someone else is causing it. Then you have to step away, reassess and move on and don't let it hold you backwards. It is easier said than done of course, but no person needs to have their physical health affected by where they spend most of their time and life - work. Enjoy what you do, do your best, and the rest will/should take care of itself. |
Thank you to everyone still taking the time to read this blog, I appreciate it and even though I have not even lived half my life yet (turning 35 in 7 weeks), and have not experienced probably half the things many of you reading this have, I hope some of the information I put on here can make some difference or spark something. I will write another blog in January after my next CT scan which with the universe's help will show double the shrinking I've had so far and really put this to rest.
Report created by: Marii
Date: 08/29/2016 at 02:27 a.m.
|FROM MY WIFE:|
I want to announce my husbands remission finally!!! It has been almost three years of dealing with some hard days and times, but we can finally say he is all clear:) We want to thank all of our friends from the bottom of our hearts for all the support they have given to us over the years. Each and everyone of you has been there and made a difference for us. We are so grateful everyday for everything we have, especially our health. Marii was so brave and never gave up the fight....and now...we celebrate EVERY. SINGLE. DAY. Thank you again for your genuine support.