St. Jude Children Research Hospital

Beside helping those dealing with cancer and their caregivers, I hope to help children dealing with cancer by having you hopefully donate to their care and future cures by donating to stjude.org

Thursday, December 29, 2011

Took today and tomorrow off from work....to relax...yeah right!

Had Bryan's appointment with the specialist to go over the blood work where he tested positive for possible Lupus which runs in my family (my sister and younger brother both have Lupus - please read earlier post). Thankfully, doctor does not believe he has Lupus since all other factors are negative - so carrier like me. She scheduled couple of other test to rule it out. Praying to God those also come back negative.

I tried relaxing the rest of the day but received about 10 texts and 3 calls from work about different issues at work that needed my input. I felt like I was at work anyway.

The lump still there on my left side of the chest. I should make an appointment to see my doctor. I still hope is just an infection since it popped up so quickly. Its tender to the touch but no real pain. I fear getting paranoid and start thinking that every little thing must be cancer related, that is why I have delayed going to the doctor (seeing if swelling goes way, then it was just an infection).

Monday, December 26, 2011

Quiet day today...slept until 8:30am which is late for me...it felt good to awaken without the sound of the clock alarm...it feels so natural and healthy but reality is that we all need to go to work and earn our pay. I was off today from work but not from the "to do list" from my wife. Out the door at 10am and were not back until 2:30pm. Then continue with house cleaning since guest were coming for dinner.

Once the house was clean, it was time to setup Bryan's new TV in his room but may he clean it first. He was fine with the task since it meant that he would have the TV up and running. But like all, there is always a catch, something that does not go as plan. In this case, the cablebox that I picked up earlier did not work. I ended taking the family cablebox and swapping it into Bryan's room. Tomorrow back to Cablevision office to replaced the unit that did not work.

The dinner with Gloria's friends went well, it ended being fun.

Tomorrow, back to work for one day then off for two. Its going to be strange week with my work days so all over the place, but good thing is that Gloria and Bryan are off so family time.

Sunday, December 25, 2011

Merry Christmas to all......hope everyon ehad a blessed day with family, friends and love ones.

Last couple of days were a blur of long hours at work followed with holiday shopping at the local mall with the wife...considering everything of the last 3 years, I should be thankful that I can manage such  busy days and not be laying in a bed suffering. So, thank you God!

Friday was a long day at work. Beside being busy with coordinating all residents holiday visits with their families and solving last minute issues, we had to deal with their holiday indunced anxieties and anger especially with those with no place to go or families willing to take them home. On top, the clinicians schedule a group session before leaving, creating further issues as the boys were anxious about leaving not about focusing with therapy. But we got through it.

Then, last minute shopping! Great, I did not get to relax at all.

Saturday, back to work for morning training. I did get to go to the gym with Bryan and Gloria. It helped.

Christmas Eve was spent at the in-laws. Although it was festive with lots of people, I felt distanced which was noticed by my mother inlaw who kept asking if I was ok. I should not be so negative but I cannot shake the feeling that this may be my last Christmas. I just hit my 3 year mark with the cancer and all it runs through my mind is that survival rate for stage 4 colon cancer past 5 years is 12%. It feels like I am running out of time. I know that I need to stay positive which I do, most of the time, especially in front of family and friends even though inside I want to scream. Last week I noticed a lump on my left chest. Not clear if it's the lymth glands swell up due to an infection or something else. Every little lump creates fear that the cancer has spread but probably a false alarm since I had a PET scan 3 months ago and did not detect anything in that area. Enough with feeling sorry for my self.

The festivities lasted until 2:30am and went to bed at 3:30am. And woke up at 6:30am to go to work for 8 hours. Then returned home for my side of the family get together for Christmas day.....so tired. I wonder if I am running my self so ragged to avoid thinking about the cancer. Either way, I am on my way to bed and no work tomorrow, so I get to sleep in!

So, good night to all and all a good night...................

Wednesday, December 21, 2011

Its been few days without posting....could blame it on work...long days with nonstop work to do, could blame it on Christmas shopping....each free moment its rush to mall with wife for those specials and bargains...but reality is that just been lazy and a bit down.

Its hard to get excited about the holidays when in the back of my mind I keep wondering whether the next scan will be clean or when it's going to tell me that I have an expiration date. I keep wondering whether this is my last Christmas or how many more.

Then unexpected small things happen to remind you that life goes on and all I can do is stay positive and live with what I have...tomorrow will take care of itself. I guess one of the reason for this blog is vent and get those feelings out so that it does not affect how I  deal with things throughout the day.

Started going back to the gym...each workout becomes easier and starting to feel strong again after the ablation. It helps to make me feel normal and healthy, it's great to sweat it out at the local gym.

Wednesday, December 14, 2011

Tuesday at work was fine until the late afternoon. Few of the newer residents testing limits but it goes with the territory. In the evening, I went with my wife and sister to a healing mass at the local Catholic church that we belong. It was long after a tiring day at work, but still refreshing. The mass was good and the chorus were talented. Although raised Catholic and continue to attend mass, I consider myself more spiritual than religious. Throughout my treatments, I attended Reike healing sessions and actually became a Reike master myself. Between my faith, healing session, love of my family and friends, I managed to deal with all the surgeries and chemo treatments with remarkable endurance.

Today, I took off time from work. I had my follow up appointment with the radiologist. My brother came over in the morning and we had breakfast at the local diner. He stayed at my house until my wife arrived from work (worked half a day). Then she and I left to New Brunswick for the appointment.

The blood work was fine which means my liver dealt with the ablation well. No chemo! (for now, anyway) The next set of scans will be done in 3 months. Although all this sounds great, please understand what it means to me. For couple of months, I get to pretend everything is back to normal and fool myself not to worry. But, then I have to get the scans and wait couple of weeks to be told if the cancer is back or if I am still cancer-free.

The percentage of surviving past 5 years at stage 4 for colon cancer is 12%. December 23rd will be 3 years since all this started and December 30th when diagnosed with cancer. Sometimes it feels easier to deal with the treatments than dealing with the anxiety of waiting to see if I beat it. At least with the treatments, I feel that something is being accomplished. Bryan is a sophomore and all I want is to be there for him for those difficult teenage years. I will continue to pray, have hope and have trust in God that all be well.

Monday, December 12, 2011

Work was fine today....took the majority of the boys to a Christmas luncheon where they had a good time. It's fun to watch them, as tough as they pretend to be, act like little boys when they put their guard down.

After dinner, I went to my sister and spend time with her and my brother who lives with her. Both of them have Lupus. He's my younger brother that I donated the kidney to in June 2006. We joked around about the genes in our family tree where we are all dealing with deceases. You just get to a point that it must be laugh at or lose yourself in pity. As my sister says, it's our faith that keeps up fighting and dealing with life as positive as we can.

It says in the bible that God only test you to your limit. Well. sometimes it feels that he is pushing the envelope!

I ended spending longer than I expected at my sister, so skipped the gym to go back home and watched a movie with Bryan. He just went to sleep. Going to watch the football game while doing some push ups, then shower and bed.

Wednesday, going to the radiologist for follow up on the ablation. Still need to figure out who will be doing the next scan: the oncologist, radiologist or the oncologist surgeon. Too many doctors!

Sunday, December 11, 2011

So much for resting today...after breakfast it was time to clean the house...no free pass that I was still hurting from the surgery...Bryan was happy that he did not have to do my part of the cleaning! Again, it was good to clean. Most take it for granted those little things until you cannot do it. Being able to do house cleaning it's precious...better than lying in bed sick or in pain!

I also ventured to the gym. My wife wanted that I only do cardio but I felt strong so tried the weights. Although a bit stiff, it fell good to lift again. Going to the gym is not about vanity but for self-healing. Beside keeping the body strong, it helps to keep a positive mindset and give that feeling that the cancer cannot beat me.

After the gym and shower, I watched with my son the Jets game. It was a good game. We finished watching the game at Applebee for dinner. Afterwards, we went to church (lots to be thankful for, I am still here, kicking and fighting).

The rest of night was uneventful, TV and horse playing with Bryan. Both are in bed now...were I should be since wake up time is 5:30am, but Giants game was a nail biter.

As I said, a nice day of no worry and no pain. I will take as many as God gives me.
Good morning....feel rested....I was able to sleep in, at least until I woke up not by an alarm clock. It went well at work yesterday. I was covering for one of my shift supervisor who took time off for his grandmother's funeral. I got to spend time on the floor with the boys at the group home. Although my wife did not want me to play sports yet, I ended playing football then basketball with the boys. It actually fell good and had no issues with the liver even though it has been only 10 days since the ablation.

After work, I went shopping with my wife for some snacks for the family get together. We went to her cousin's house where they were making empanadas....that was good. We left for a short time to Gloria's sister for our weekly Secret Santa dinner with the inlaws. Then back to the party at her cousin where by now the Tequila came out and the party took off.

Gloria was having a great time with her family, so even though I was exhausted I pretended that I was fine so that she would no feel bad. With all that we have gone through the last three years fighting the cancer, I relish this few moments where she can relax and be happy.

Today.......its football time...Lets go Jets!

Friday, December 9, 2011

So tired, double shift at work from 6am to 11pm. Too soon to be working so many hours but had not choice. Skipped lunch to go to Lab Corp for blood work. I have the follow up appointment with the radiologist doctor that did the ablation next Wednesday and he wanted to check liver functions.

Then took my dinner break to run to my oncologist appointment to get the port flushed, more blood work and short talk with the oncologist. My wife met me at the doctor's office. Doctor addressed possible options if the cancer returns again. Gloria was happy to hear that there are options but all I could think was: more shit to go through!

The oncologist keeps stating how he will cure me and that I am the one that can overcome this aggressive cancer. But to tell you the truth, I dread the idea that it's going to be an ongoing treatment after treatment. All I can do is take a deep breath and keep fighting.

When we entered the office today, all the patients waiting were older and looked sick while I sat there looking strong and healthy with everyone looking at me like "what's wrong with him?" I ran into an old associate from work who had been cancer-free for 5 years. She was not aware of my situation. As I listed all the surgeries, chemo therapies and treatments of the last 3 years, I could see in her eyes the confusion of how I have dealt with all that and still look so healthy.

As difficult as it has been, eating better and keeping up with going to the gym even during chemo has helped my body cope with all the treatments. With the help of family and loves one, I have been able to keep positive as much as possible. I have increased time to meditate, do some Reike and just take time to relax (even though it's hard at times with my field of work).

Thursday, December 8, 2011

It felt good to go back to work and get back to the routine, feeling healthy and productive. I had wished my first day was not so long, but I had a Christmas School dinner to attend at one of the alternative school that one of the resident at the group home goes. It turned out to be a nice dinner and was enjoyable. The school usually picks an organization to sent the money collected from all the raffles and sales of the night. To my pleasant surprise, it was for St. Jude. It made it more enjoyable.

Gloria, my wife, is upset with me for working so much so soon after the surgery but bills needs to get paid and I need to work.

What really upsets me is dealing with the insurance company. Got home to open a letter from Blue Shield saying that they denied the overnight stay at the hospital after the ablation as "medically unnecessary." Now I have a large hospital bill until I can appeal the decision. Sometime is more emotionally draining dealing with the insurance company than dealing with the cancer.

What does "medically unnecessary" really means? Its bad enough getting up everyday wondering how many more days I may have, than to worry whether the insurance company will approve the test or treatment that may give me more days. It sucks.....and draining.

Wednesday, December 7, 2011

Getting ready for bed and work tomorrow. It was a emotionally difficult day. I was alone most of the day with my wife at work and Bryan at school. I tried watching a movie but held no interest. I made the mistake of email my boss for a quick update of what was going on at work so that I would know what awaited. Instead of easing back at work, I have several issues to resolve and extra shifts to cover, great!

At least the hot shower helped. Gloria is not happy that I may need to work couple of double shifts so soon after surgery but have no choice at this time.

Almost a week since the ablation procedure. I though that I would have recovered better than what I feel right now. All pains are gone but still have some tenderness on the liver where it was burned. I start work tomorrow and looking forward to getting back into routine. I do not mind sometime off from work if I can do things but just to sit around the house drives me nuts.

I meet with the oncologist on Friday after work. Last time we spoke, he wanted to avoid chemotherapy. The doctor wanted to take a "wait and see" if this was the last tumor. I will get another PET scan in 3-4 months and hope that it's all gone. You need to understand what it feels like to put your life on hold until the next scan wondering what will be the verdict and if this one will be the final one, it sucks.

Next Wednesday, I go back to RWJ Hospital for a follow up visit with the radiologist that did the ablation. I may need to do a CAT scan in a month or so to see if they burned all of the tumor. If not, then I may need to repeat the ablation.

Now, I have three doctors to deal with about my cancer: the oncologist, the oncologist surgeon and the oncologist radiologist. The list keeps growing.

Three years ago, I barely saw or needed to see a doctor while now I am in and out of doctors offices too many times. There are days I just want to call it quits but I cannot. Part of me refuses to give in or let anything from forcing me to accept defeat. Part of me refuses because of my family and friends. Part of it is because I refuse to show weakness. I just hope God gives me strenght and peace of mind for whatever lays ahead.

Monday, December 5, 2011

Continuing my story.....I woke up in the middle of the night, throwing up and feeling miserable...assumed I had a stomach virus. In the morning, I went to work without eating since anything I ate came right back out. After getting the boys out to school from my job (group home), I did the paperwork necessary and went home early to sleep it off, but by the late afternoon I was not better. I made an appointment with my doctor and went there with my wife. Bryan stayed home doing his homework.

The doctor was quick to diagnoses that something was blocking my intestines. After a stool test where it came back positive for blood, he admitted me to the hospital. When the Barium drink they gave me did not go through for the CAT scan to show anything, I was admitted. My boss had been admitted early for her pregnancy and was due any minute. I was concern that with both in the hospital who was going to run the facility.

Starting December 23, 2008, I spend 19 days in the hospital. I have documented each day in a journal which I did during the months of recovery at home just to keep the experience clear. I promise that one day I will post the journal, all 20 plus pages, for those who may be interested. For now, a quick summery.

It took until December 29 for the Barium to flush out of my system so that the doctor could repeat it by doing a series of x-rays to observe where the obstruction was located. During all this time, I was on no fluid or food restrictions and my weight dropped rapidly. By the time I left the hospital at the end of the 19 days, I lost about 35 pounds!

On December 30, I had a colonoscopy done to see what was the obstruction since now the knew where was the location. The night before as I walked the hospital halls with my wife, I had a bad feeling that it was cancer and told my wife. She tried to change the topic and stick to a simpler problem that it was a polyp or trapped food in the colon. However, I was right and it did turn out to be colon cancer but we were not aware how bad yet. Surgery was scheduled for the next day.

So, as everyone else was getting ready to celebrate the new year, I was being taken to the operation room where they took out a baseball size tumor from the colon, a large section of the colon with the appendix, 21 lymph nodes which 2 had cancer, and a biopsies of the liver which had 3 small tumors.
When I woke up in excruciating pain, I knew that it was bad, stage 4 colon cancer. Again, I will omit the details for the rest of my stay at the hospital and defer to the journal once I post it.

In the middle of January, I went back to surgery to place the port on my left shoulder for future chemotherapy. I started aggressive chemo in February 2009 for six months, 12 sessions very two weeks. It sucked!!!!!!!!!!! Best way to describe the feeling is to tell you to put your brain in a bucket of bleach and maybe you may come close to chemo.

I returned to work after 4 months and completed my chemo rounds by July 2009. Then, just as I was feeling better, I had the surgery on the liver to remove the 3 tumor in August 2009. I was cancer-free. In September 2009, I started six months of chemo pills as precaution with Avastin treatment every 3 weeks. I remained cancer-free. I completed the pills in March 2010. However, four months of the chemo the cancer returned, three new tumors on my liver which were detected in September 2010.

During my cancer, a dear friend was also diagnosed with stage 3 cancer. She went through similar events of treatment and was cancer-free as I was. Then her cancer returned in August 2010 while my was detected a month later. After some delays with insurance issues, I was operated in November 2010 and was once again considered cancer-free. However, my friend died in early November. I could not understand why I was cured and she died. It hit me hard. I cried for a long time.

In December 2010, I started aggressive chemo with different type of medication but just as bad. I hate chemo!!!! I remained cancer-free while on chemo. Once it was stopped, it returned four months later in the liver again. This time one tumor, November 2011.

I just had an ablation procedure at RWJ Hospital to burn the tumor. Although easier and quicker to recover from than surgery, it still hurts! I am again cancer-free but for how long?

At work, they call me superman since I recover quickly for the treatments and kept my weight. Most people would not have guessed what I have been through by looking at me since I do not look like the typical cancer patient. I do look healthy and strong, but each treatment takes it toll of me. I do try keeping positive and have lots of support from friends and family but it sucks. The worse is the waiting for the next scan, anticipating that it going to return and the nightmare start again. I hope this will be the last. I have an appointment with my oncologist this week, hopefully no more chemo, at least for now.

I figure that there must be a reason why I am still live........for the life of me, I do not know why. With this blog, I hope, one, to express my frustration/feelings and, two, maybe connect with others sharing similar experience and help them through it. I hope to explain it in more detail, my experience and how it has affected me and, more, how it has affected my love ones (my care-givers).

Sunday, December 4, 2011

My younger brother was diagnosed with Lupus which runs in our family (my sister was diagnosed with the decease in her teens). By the time the doctors agreed that it was Lupus and started treatment, he had lost his kidneys. On June 6, 2006, I donated my left kidney to him. It was great seeing him not needing to go to dialysis 3 times per week.

It took my about a year and a half to fully recover my strenghts. Prior to the surgery, I was going almost daily to the gym and could bench easily 300lbs. I was strong, but like I said it took longer that I expected to fully recover but I did and everything seemed great. By December 2008, I was feeling great and people/friends told me that I looked great! If I had any concerns about my health, it was only the possibility of having Lupus which I was a carrier (which I was tested after my brother was diagnosed).

My boss and friend was due to have her first baby around December 23rd. She was going to be out for couple of weeks which meant I needed to be available at all times at the group home, so being sick was not what I needed or wanted.

December 22, 2008, started as any normal Monday and went to work as usual. After work, I went home where I had dinner followed with helping Bryan with his homework. After all my father/husband duties were completed, I went to the gym where I finished my heavy workout with no issues. When I started to do ads workout, I started to feel nausea so I stopped thinking that dinner did not seat well. I went home and skipped my after workout meal. After taking a quick shower, I went to sleep not feeling too well.

(will continue my story on next post - computer is acting up - sorry)
My intention for this blog is to share my experiences in dealing with stage four cancer, in my case, colon cancer. For the last three years I have been battling the decease with some success and some failures. Through it all, I have gain insight to myself and others who have traveled hand in hand with me. At the end, I do not know if I will beat the cancer but I will give my best and keep positive not only for me but for all those that have shared their love for me and have given so much support throughout the ordeal.
Lets start with some background information. I was born in Santurce, Puerto Rico. I was raised mainly by my grandparents since mom was a single mom of four which in its own it was a difficult position to be in Puerto Rico at that time. She did her best to take care of us with family support. Dad left went I was four never to be seen again which included his side of the family. I grew up thinking that there was only one set of grandparents. Without dwelling too much into my childhood, we were brought up to be independent and self-reliance.

At the age of 10, my family moved to New Jersey or should I said "Jersey." The major change that came about the move was that I started to focus more on school as I adapted the a new "world" so different that the island and we were more alone so expected to be more self-reliance. I excelled at school and graduated eventually with honors from Dover HS in 1979.

Colleges years went too quick at University of Michigan. Due to financial hardship, I was unable to finish my degree and ended traveling the country for 2 years, a dream of my as I grew up (to see the other side of US). I returned to Jersey in 1985 after a hiking accident in Utah where I was living.

After I recovered, I took what I though was going to be a summer job at a group home for boys. All I can said that after 26 years, I am still working the home and love my work. For those that want to know more about St. Peter's where I work, go to their website: stpetersorphanage.org.

Currently, I have been married for over 20 years to a wonderful wife, Gloria, and have a great son 16 year old boy, Bryan. They have been so supportive throughout my struggle/battle with cancer. So, that's my background information. Next entry, I will start with what has happened the last 3 years with cancer.