Friday, December 17, 2010
Dr. Trisal showed us Marco's scans and it shows a huge tumor that hasn't shrunk much but we were surprised to hear that there was a second tumor around that area, which is the one that has him worried... is extremely close to his aorta.
If surgery is agreed on... Marco will have to pay a big price starting with having his shoulder blade removed leaving him with some movement in his left arm.
With a hole as big as a Denny's pancake that will have to be reconstructed by a cement chest wall to help him breath and will take a piece of his lung as well. They will need to take a piece of his stomach on the right side to patch up and close him up after surgery. This is a tentative plan till the Sarcoma Conference makes a decision on what will be good to help Marco in the long run.
If they all agree and see that surgery is not an option for Marco to have a good quality of life then the tumors will grow and the cancer will take its course.
This is not what we wanted to hear but we knew it would be something they would eventually talk to us about. More than devastated is what I am feeling right now.
LIFE IS SO UNFAIR!!!!!!!
Friday, December 10, 2010
He should of been feeling better since Wed. but that hasn't been the case. This last chemo combo is really kicking his ass. The pain is worse and his leg is swollen and red. All the side affects seem to be lasting longer.
We will keep you posted......
Thursday, December 2, 2010
Marco has had body pain , especially on his left side. He is not a happy camper. He feels like shit and wishes all this chemo and everything he is going through will be enough for Dr. Grannis to want to do the surgery.
I hate to see him like this and hope we get good news on 12/10 ....even though we know he will be in more pain than ever but I least they will get the damn tumor out.
Will keep you posted ....
Wednesday, November 24, 2010
We are thankful everyday that we have family and friends. Who lend us a hand and help us get through our day at COH when we are there all day or not. Thankful that we have your full support during Marco's toughest fights. We are so very thankful to have you all in our lives.
Without all of your help we wouldn't be able to drop off the kids at school on days we would need to be at COH for early appointment. We wouldn't be able to watch the kids when Marco was called in to see the doctor. We wouldn't be able to pick up the kids from school if we were running late in a appointment. We are thankful that some where there to get us out of a rut when we needed it.
We have gone through tough times but it just seems that they just get tougher as we go along in life. We will be letting go of our home that we have lived in for the last 13 years in a couple of weeks. My parents have offered to open their doors to us. If they know what they got themselves into ....I don't know... but we are very thankful from the bottom of all our hearts.
Thank you to all of you have tried endlessly to help us keep this house. We are just glad that we have family who is willing to take us all in. Keeping our heads up out the water has been extremely tough, trying to see the light in all of this is even tougher to do.
We also are thankful for the times you go out of your way to get us out of daily stress and enjoy family time in different ways. Weather it be kid'nap'n to a casino to just inviting to have dinner.... to a Great NASCAR race.
WE THANK EACH AND EVERYONE OF YOU FOR WHAT YOU DO FOR OUR FAMILY.
Tuesday, November 23, 2010
Dr. Chow came into the room and let us know that the tumor hadn't grown but hadn't shrunk either. Looks like the tumor is starting to take liquid form instead of it being solid as it was meaning it is dying from the inside at a slower pace. Well this wasn't good or bad news we are stuck in a middle. Dr. Chow wanted Marco to see Dr. Grannis and see if surgery is still an option and if so Dr. Trisal will be assisting him in the surgery.
After our consultation was over Dr. Chow didn't want Marco to stop the chemo so he told Marco to continue with Cycle 5 while all the appointments were made and a decision was made in regards to the surgery date. So after 90 min. of Gemzar chemo, we were finally going to go get something to eat and go home or so we thought. As we arrived at our lunch destination Medicated Man noticed that one of our tires was flat, so we had to drive to La Puente to a Sears Auto Center to get it all taken care of. An hour and a half later the car was done. We finally got home , Marco was doing well even after a long day.
Will keep everyone posted on what will happen on the next appointment.
Friday, November 19, 2010
The stress has been easily starting to creep up....Marco will be getting his CT Scan on Monday which will determine a lot of things. We will find out if the tumor has shrunk to Dr. Chow's expectations and if so, he may continue to have his chemo later on that same morning with one more cycle to follow to complete 6 cycles of chemo.
If tumor hasn't shrunk significantly, but hasn't grown, then Marco will have an appointment set up to see Dr. Trisal and or Dr. Grannis in which time they will determine what will be the next step to do the surgery or not. Last, if chemo is not working and it is still growing hopefully Dr. Chow has a plan B. In which way, it is stressful to think that one scan can determine a number of outcomes.
On a different note, after school today the kids will be on vacation for a week! Yipee! turkey day is just around the corner......Marco is going to BBQ the turkey ......Um can't wait.
Pictures will follow .....
Wednesday, November 17, 2010
Dear Mrs. Mathews’ 2nd Grade Class
I wanted to share some interesting facts about my son Matthew. Matthew is a great, awesome kid. He has one sister, Gianina who he loves very much. They love to have movie night with popcorn and candy. Matthew enjoys going on surprise road trips, especially if he doesn’t know where he is going. He loves Miyako Sushi. Family time is very important in our family and we do a lot of things together.
Matthew tells the funniest knock, knock jokes like …..
I didn’t know you could yodel.
He also loves practical jokes and pranks too. For Matthew’s birthday his aunt gave him a practical joke box filled with funny pranks. It had some funny eye glasses that he brought to show you.
The first time he opened the box he reached in and grabbed an envelope with a rubber band wrapped around a piece of medal. It said to twist the rubber band slowly around the medal and close the envelope slowly.
Well his grandpa came over and Matthew gave him the envelope to open. So grandpa opened the envelope and he jumped so high when the rubber band came loose in the envelope. It was funny, grandpa got scared. We all started to laugh.
Drawing, painting and craft projects are some of his favorite things to do. We just made the remote control car from Toy Story. He has such great ideas that we use in our crafts for different holidays too.
Well, I hope you enjoyed reading some interesting facts about my son Matthew. Till next time.
Tuesday, November 16, 2010
Even with all the worries we have in our lives. Seeing Marco sick and tired all the time. Dealing with life changes that we have all had to do in such a short time.
The kids have done a great job keeping all their grades up in school.
In the beginning of this school year DLP was having a hard time with all her AP classes and she was even having a melt down at one point. Her grades where going down not because she wasn't doing her work but because these college class were kicking her butt.
After going to the meet the teachers night , the teachers mentioned that parents should expect to see the grades drop from students who were getting A's and B's to them getting D's and F's.
She asked for help to get these grades up. She finally got the hang of it. We are proud to say that she has done an amazing job and getting her grades up from D's and F's to B's and C's. We are so happy for you DLP! We are so proud of you G, we know you have worked hard to get these grades up and we appreciate all the time you spend after school to work to get these grades up.... determination and willingness great job!
Machini has had his share of fall outs in the last couple weeks but has also done a great job in his behavior and class work. He was named Star Student of the Week in school and has gotten 100% on all his spelling test. He even got the Top Banana for reading and doing his AR test with also 100%. Great job Machini!
As a parent you hope your kids do well in school, but when you have your life flip upside down from one day to another. You cross your fingers that your kids can coupe with everything around them and they have the strength and ability to move forward and maintain a "normal" routine in school and in daily life.
They prove it with the good grades and academic achievements in school.
WE ARE SO PROUD OF BOTH OF YOU!!!
Monday, November 15, 2010
Yesterday, we celebrated our 18th Anniversary.
Most of you know our story. We've known each other since we were 9 or 10. Grew up in the same neighborhood and we were high school sweet hearts you could say.
I proposed to Marco in June 92' and we were married that same year in November.
Had our beautiful daughter and then later we had or handsome little man.
Seems like just yesterday we were planning on getting married and planning our lives together. Our little family is our greatest accomplishments in life. We are lucky to have such great kids.
18 years looks like a long time on paper but it sure seems like just yesterday when you enjoy everyday with the one you love.
Happy Anniversary again Honey! I LOVE YOU!!!
Friday, November 12, 2010
Marco had combo #4 and it hasn't gone without body pain and some fever. Day 8 of the combo is something we do not look forward too. I see Marco in a lot of pain and not being able to take that away is heartbreaking. The pain comes from the immune system injection that he get on the 9th day after his combo chemo. This medication helps the body to produce more bone marrow and fight of the poison that has gone in his body. There is basically a war in his body and that is were his pain comes from.
His appetite has been good. Just has to eat real slow and with some difficulty to try to keep it in. But for the most part it stays in.
Monday , November 22 he has an appointment for a CT Scan and to see Dr. Chow. Will then find out if the chemotherapy has been working in shrinking the tumor or if there hasn't been any change or worse case scenario the tumor has continued to grow. Either way a plan should be put into play 1. continue with the chemo if tumor is shrinking to Dr. Chow's expectations 2. Hasn't shrunk but hasn't grown..poss. surgery or 3. The chemo hasn't done anything and it is still growing....?
We have to look at all the possibilities to be prepared.
We will keep you posted on what is going on as it comes. For now, Marco has another couple of bad days before he starts to feel better.
Marco was feeling good a couple of days before starting his 4th cycle of chemo....he decided he was going on a man-cation. The week before we decided not to let the kids go to school to enjoy a day at sea with us. I think its ok ...especially if Marco is feeling good. Hey we have to take advantage that he wants to take us too.
NoNo to go and they didn't hesitate to go on the man-cation with Marco.
ellow tail was at the end of the line. He said it put up a fight and it had going all around the boat. I told him if he would of taken us, we would have video the whole thing. Marco said he was exhausted after bring the fish to the boat but it was worth it. I told him he should of asked for help to reel it in. His response was no....you have to bring it in yourself. He had to catch his breath afterwards and even the deck hand asked if he was ok. He said it was all worth it! They had a great time!
Let me tell you that this Big'O thing didn't last too long. Marco had it all filleted and the next day we made it on the grill. Marco did a Korean BBQ and Salt and Pepper on the other. Let me tell you they were delicious. We still had enough to make a shrimp soup with the rest of the BIG ONE. Thank you honey .....GOOD EATS!!!!
Marco told Matthew to bite the squid...yeah that was nasty and to close to his mouth. We all laughed and told him not to bite it.
It was a great day...the weather was perfect...the water was calm and we were catching fish. What more could you ask for. And not to mention that Marco was feeling good. We all had a great time together doing what we all love FISHING! Now Matthew says he is not staying home no more he will be going fishing from now on.
Matthew showing off my fish.....
Monday, October 18, 2010
Marco had been doing good. He was feeling so good that he even made it 4 days out in Fontana at the Auto Club Speedway for NASCAR PEPSI MAX 400. Was extremely tired at the end of everyday but he said it was well worth it.
He got a chance to get autographs from some of the drivers and even got to see Danica Patrick in the garage as well.
This last week he has been very tired. With some pain and even some pain in a different area than before. We will be seeing Dr. Chow this morning and he will then be headed to get his 3rd chemo combo.
Marco is not looking forward to it, he says if the tiredness was bad he would hate to see what is coming with this other two chemo's.
All in all, he is doing good.
I would like to take sometime to thank everyone for your thoughts and well wishes. We appreciate you all.
Friday, October 1, 2010
Treatment Update on Soft Tissue Sarcoma
• Overview of soft tissue sarcoma
• Current standard of care
• New treatment approaches
• How clinical trials contribute to treatment options
• Pain and symptom management
• Communicating with your health care team
• Quality-of-life concerns
• Questions for our panel of experts
Thursday, September 23, 2010
By Bill Matteson, 2003 bone marrow transplant survivor
(From City of Hope’s “High Hopes” newsletter by patients for patients)
There is no substitute for good health-care providers who systematically monitor patients and their conditions and prescribe appropriate treatment and medication. However, as patients, we cannot blindly follow that path believing that “everything is being done.”
Everything is not being done as long as we totally rely on others to minister to our needs. As I’ve mentioned in prior articles, we need to be involved in our care, monitoring our own bodies and participating in the healing process, not just relying on others to do the right thing.
I believe one of the highly-effective actions that we, as patients, can do is to have a strong, irrepressible, and continuous positive attitude. This is not always easy, particularly when we receive less than positive news. However, sulking and moping after receiving such news is definitely not productive. Taking this thought further, I believe anger, anxiety, frustration, depression and despair are counterproductive, and actually feed and nourish the problem.
Along these lines, there is a saying something to the effect that anticipating the best will almost certainly promote the best, and anticipating the worst will promote the worst. These are basically self-fulfilling prophecies, predictions that directly or indirectly cause themselves to become true.
Considering that what is going to happen will happen (it is what it is), it doesn’t do us much good to worry about it, to have negative self-fulfilling prophesy thoughts. Alternatively, I believe we will be much better off if we turn our energy into positive thinking – think good thoughts and help them to become true. This is what I always try to do.
For the most part, as I’ve gone through my journey of a bone marrow transplant, several back surgeries, more surgeries for melanoma on the left side of my face, radiation treatments to kill any renegade melanoma cells so they wouldn’t spread, and ongoing treatments for melanoma that spread to my lungs and liver anyway, I’ve always approached these challenges as ones that I can handle and beat. As soon as I can’t handle and beat them, I suspect I won’t have any attitude, let alone a positive one, so what good does it do to worry?
If the truth be known, I’ve pretty much ignored these challenges as nothing more than “bumps in the road” and gone on with life being status quo as much as possible. I listen to my doctors, follow their suggested regimen, assume the results will be positive and continue on. I do not dwell on any negative aspects of my situation and the resulting treatment. As I said, I believe that is counterproductive.
Conversely, I try to make positive opportunities out of the various negative aspects of my health problems. Now you might be saying, “How do you come up with something positive about having melanoma that has spread to your lungs and liver?” Well, I’ve come up with several things. For one, all my friends visit and/or call more often. It’s nice to hear from them and feel their concern and know they care. I also see it as another experience to write about in my columns and these might eventually help others (someone or something is sending me through all these “opportunities to excel” for a reason).
I do a few other things periodically to reinforce a positive attitude. One is to reflect on what a good life I’ve already had: a wonderful family life (both in my youth and as I matured and had my own family), enjoyable educational opportunities, a career that took me all over the world, fun vacations, and miscellaneous other successes. I’ve done most things I wanted to do and certainly have no regrets. More than likely, you all have similar things to be thankful for.
I also take time to realize that no one gets out of this life alive; Einstein died (he was smart), Rockefeller died (he was rich), Elvis died (he was famous), and billions of others before me have died. It’s nothing new; the only question is when, and worrying about it won’t make it disappear. Maybe ignoring it won’t make it disappear either, but if my doctors, especially City of Hope doctors, are using their education and experience to do the best that can be done, there’s not much I can add except a positive attitude. My excellent doctors and my positive attitude have gotten me seven years down the road after my transplant, and actually well over a year down the road after my initial diagnosis of melanoma in late 2008.
With my melanoma, I’ve heard a few doctors mention I’d have as little as two months to live, and I’ve listened to that now for the last year or so. My job is to figure out how to extend this, two years or even more. I don’t need no stinking melanoma; I have too many articles to write, not to mention fishing, camping, traveling, and playing golf to get back to. I use my “Bucket List” to keep me going! You could do the same; having a “to do” list of things you still want to experience gives you purpose and goals, and having goals to accomplish is positive, leaving no time to give in to adversity. Live, love, laugh and be happy; and straight ahead for a long and healthy life.
Wednesday, September 15, 2010
We arrived early and basically called in on time. Marco is so funny after the nurse came and introduce herself to us she said she was going start the IV line and go see if the medication was ready and would be back in a bit.
As she leaves Marco looks over at me and says "do you think that nurse would get insulted if I told her something?".....I looked at him and asked " What are you going to tell her?" I even think I gave him one of those OH SHIT! what is going to come out your mouth. So, the nurse came into the room just as I asked him again what he was going to tell her.
And Marco blurs out ......" So how do you feel about starting an IV line?" What!!!! I thought I was going to choke on my own spit when we asked ....I was waiting for something like Did you know you are wearing your pants on backwards? or something along those lines.
So the nurse looks over at him and smiles and says good, I've been doing this for 20 something years and worked in the ER and was a paramedic so I know what I am doing.
We all laughed and Marco says "Good cause you only have one shot at this!" We all laughed again and she started to look for a good vein. She says I found it, so here we go. Marco said it wasn't bad at all. She did it quick.
He has been feeling some tiredness but over all, so far so good. His next chemo combo will be next Monday and that is the one that will make him sick so we are crossing our fingers that it will not get any worse than last time and he will be able to tolerate it again.
I forgot to mention that on Sunday, Marco's hair started to fall out .....so I had to go and cut and shave his hair off. Can't begin to say how I feel about that. Hair or no hair I still love you Handsome!!
Friday, September 3, 2010
I have been taking his temperature just make sure he doesn't run a fever because he had been feeling warmer than normal but it has been a steady 99.9- 100. so he is good. But from experience we know that at any moment this can turn ugly and I have to drive him to COH to check if his platelet count has gone down or something else. So for now just keeping an eye on my handsome.
I hate to see him like this...it just piss's me off. That he has to go through all this for no reason. And all this bullshit that all things happen for a reason is STUPID!!!!
His whole face changes when the pain is there and he says I'm ok, yet I see right through it. He is just exhausted and looks very tired. He says his whole body feels numb, it hurts from head to toe's and as I try to rub his back to sooth he says it hurts so he asks for me to stop. The immense feeling of not being able to do anything for him right now drives me crazy.
His appetite till today has been great. Today was Chinese food, not take out , I made it myself and boy was it delish. Diner time Marco didn't want to much so I think some nausea is still lingering from this morning. But he said it was good. Machini said he was impressed. How can a almost 7 year old tell me he is impressed by my cooking (hilarious), we all just busted out laughing.
Hoping the side affects are not going to get worse and that tomorrow is a better day for you handsome......
Thank you all for calling, thoughts and positive vibes... we feel the love!
Thursday, August 26, 2010
Here are some excerpts from the current studies on this combination chemo treatment. Some terminology to remember too about response rates and palliation:
Complete Response means:
All detectable cancer is now gone after treatment. There can still be cancer left, but too little to detect, so a Complete Response is not the same thing as a cure, although some patients with a Complete Response may be cured.
Partial Response means:
Roughly speaking, a decrease in the amount of cancer of at least 50%, but less than 100%. More precisely, a decrease in the total cross sectional area of all measurable tumors of at least 50% but less than 100%.
Objective Response Rate is:
The proportion of patients with defined tumour shrinkage; generally it is the sum of partial responses and complete responses
Palliative chemotherapy is:
A type of chemotherapy that is given specifically to address symptom management without expecting to significantly reduce the cancer.
Adjuvant chemotherapy is:
Chemotherapy given to destroy left-over (microscopic) cells that may be present after the known tumor is removed by surgery. Adjuvant chemotherapy is given to prevent a possible cancer reoccurrence.
Neoadjuvant chemotherapy is:
Chemotherapy given prior to the surgical procedure. Neoadjuvant chemotherapy may be given to attempt to shrink the cancer so that the surgical procedure may not need to be as extensive.
From current sarcoma articles:
"Treatment options for patients with advanced soft-tissue sarcoma remain limited. There are few agents that achieve high objective response rates and none that result in cure for even a minority of patients. Although doxorubicin with or without ifosfamide remains a mainstay of treatment for many histologic types of advanced soft-tissue sarcoma, the combination of gemcitabine and docetaxel (Marco's current treatment) has become an established treatment option for patients, perhaps particularly those with leiomyosarcoma. The clinical development of the gemcitabine–docetaxel regimen is outlined, and data demonstrating the efficacy of this regimen in soft-tissue sarcoma are reviewed.
...retrospective studies and some case reports have been published that provide additional information regarding the activity of fixed-dose-rate gemcitabine and docetaxel in soft-tissue sarcoma. In one retrospective study, 133 patients with any number of prior treatment regimens were treated with fixed-dose-rate gemcitabine and docetaxel. Thirty-eighty percent of patients had had two or more prior regimens; 57% of patients had leiomyosarcoma. Objective response was observed in 18.4% of 114 patients evaluable for response (three complete responses and 18 partial responses). Sixteen of the responses were among 66 patients with leiomyosarcoma (24.2%), and five were among patients with other soft-tissue sarcoma histologies...
In another retrospective study, 35 patients with any number of prior regimens received fixed-dose-rate gemcitabine. The objective response rate was 43% (five complete and 10 partial responses). Objective responses were seen in seven patients with leiomyosarcoma, one malignant fibrous histiocytoma / undifferentiated high-grade pleomorphic sarcoma, two osteosarcomas, three angiosarcomas, one malignant peripheral nerve sheath tumor, and one Ewing's sarcoma.
There have also been case reports of objective responses to gemcitabine and docetaxel in other unusual sarcomas. A patient with pulmonary angiosarcoma was reported to have achieved a complete radiographic response. In addition, a patient with locally advanced leiomyosarcoma of the bladder had a near-complete pathologic response to gemcitabine–docetaxel delivered as neoadjuvant therapy.
"Apart from the chemosensitive small round cell tumors such as Ewing’s sarcoma family of tumors (ESFT) and rhabdomyosarcomas (RMS), some of which are potentially curable even when metastatic, all other patients with metastatic soft tissue sarcomas (STSs) are destined to die from their disease however aggressive their management. There are some exceptions, including a proportion of patients with limited pulmonary disease who have a long survival after lung metastasectomy as well as a fraction of patients (30%) among those achieving complete response (CR) after chemotherapy (accounting for 1–3% of patients with metastatic disease). For the majority of patients, the goals of treatment include palliation of symptoms and prolongation of survival with improved quality of life. Given this fact, one needs to consider how aggressive the treatment should be in order to balance the hoped for benefit against the inevitable toxicity. One important question that remains open is whether combination chemotherapy is better (in terms of overall survival [OS]) than sequential administration of active single chemotherapy agents...
The key role of chemotherapy in the management of STS is in the palliation of advanced disease. Active agents include doxorubicin, often used as a single agent, and ifosfamide. The combination of these two agents may produce a more rapid response and an increased likelihood of tumor shrinkage, but it is not yet clear whether there is a definite advantage to the use of combination therapy in terms of survival. Adjuvant chemotherapy for STS remains controversial but may be advantageous in certain situations, for example, where optimal RT cannot be given and local control is vital. Individual disease types are now treated differently, for example, synovial sarcoma is particularly sensitive to ifosfamide, angiosarcoma to taxanes and leiomyosarcoma to gemcitabine or the combination of gemcitabine plus docetaxel..."
From: Update on gemcitabine and docetaxel combination therapy for primary and metastatic sarcomas. Hensley ML. Curr Opin Oncol. 2010 Jul;22(4):356-61.
Role of chemotherapy in the management of soft tissue sarcomas. Krikelis D, Judson I. Expert Rev Anticancer Ther. 2010 Feb;10(2):249-60
Marco is getting a different type of chemo this time. Marco's sister will be posting it later if you are interested in reading about it and what it is used for and what it does. So he will be going down to COH and coming home after each chemo. He just had one on Tuesday and will return next Tuesday ( 8 days later) for two chemos and get an immune system boost shot the next day.
Thank you all for your thoughts and positive vibes you all having been sending. We appreciate them all.
Tuesday, August 24, 2010
I wonder how strong these chemo that they are going to give him this time are going to be. It's going to be 2 rounds of this shit to shrink them.
Really putting my positive energy that he is able to tolerate it as well as he has had in the past. I hate this, he is called in and is read what the bag says, like we know what the hell it means. "You will be getting this, this, some of that, along with this, with an explanation of what each does and it should run about this amount of time."
There is something about seeing the shit dripping into the the chamber before entering the tube that will eventually go into his veins.
As soon as you know it went in, the pit of my stomach just tightens and all I can think about is I fuck'n hope it works.
Well, today Marco will start a new regimen of Chemo. Out Patient: He will get first dose this morning, he will return in eight days and get the second dose. Then go back to get a Nulasta shot to boost up his immune system.
After twenty-two days he will again do the same as above mentioned, x-ray's will be done to see if the tumor has shrunk. If so, the plan is to do surgery to remove it.
The tumor is near the chest wall, up on his scapula. Surgery would be performed by Dr. Trisal. This would be a big surgery, reconstruction and cosmetic construction would be need too. He will have a longer recovery and with that lots of pain.
Handsome, I know that this is going to be another physical as well mental challenge for you. Let's see what this chemo does.....I hope it takes out this SOB for good! Time to take out the warrior outfit, I know you have it in you to face this shit again. You know that we all stand behind you on any decision you make.
Positive vibes with lots of love that this chemo does what it has to do. We all love you very much!!!!!! I want to say that I appreciate all that you do...for yourself and for us to get better, and the kids know all the extra effort you put in for them too. As stupid as this may sound but thank you ......for fighting everyday and continue to fight for your life these last 3 years.
Monday, August 23, 2010
Marco had already made a decision to not do anymore chemo treatments or surgery's but has now taken a second look at things and has decided to go ahead and do the chemo. Going in with mixed emotions, he is the one that is going through all this and he is the only one that has to deal with all this shit. I can only go by what he is feeling by looking at him and seeing the look in his face that he feels like shit.
We had just taken that beautiful coastal road trip a couple of weeks ago. In that time I can say that we left cancer behind us and we didn't think of COH we didn't think that maybe something would be growing inside Marco. It was a peaceful road trip we didn't even get on each others nerves. We all enjoyed each others company....it was the best time we have had as a family that we all enjoyed. Who knew that this awesome feeling would come to a straight halt.
Why can't we just stay on the "road trip moments". Why doesn't this SOB just stop growing and coming back. Why did all this happen in the first place? Why is this happening again?
Marco has to deal with chemo again and it's unfair........he says it's the worst thing someone has to go through. Not to mention all the surgery's he has had and all the pain that comes with the aftermath.
Selfish is the word that came to our minds in the last couple of days.....is the person who is going through cancer selfish for not wanting to go through all the shit with chemo and surgery. Are they selfish that they need to think twice before saying yes to harsh treatments , selfish to say I DON'T WANT TO GO THROUGH THIS ANY MORE!!!!! to put themselves first besides their children, wife, family and friends. This is one the hardest things that goes through Marco's mind. I had to take 3 steps back and say you are right.
The same way we are selfish to say you need to do the treatments, chemo, surgery's, radiation, even though we know all the shit that he goes through because he has gone through it before and "He can do it!".....I am not sure anymore....and neither is Marco.
We are selfish to think that all this shit needs to be done for the kids, for the wife, for the family and anyone else. I feel selfish to think that he may be doing all of this because he feels he has to prove a point, not to look like he is giving up, the pressure he feels of letting family down. When will enough be enough..........Marco has had to make one of the most difficult decisions in his life. It all comes down to damned if you do and damned if you don't kind of decisions. At the end Marco is the one to make that decision and we all need to respect his decisions. Whether we like it or not.....we are not the ones going through all this shit.
Today was the one of many devastating days to hear that the cancer is back. You can't imagine the anger that I feel...it is just overwhelming in ever way possible.
Marco will start chemo tomorrow because of the 1% something will help, but 99% of his entire being is saying he should not be doing it.....that outta tell you something.
Tuesday, August 17, 2010
Tuesday, August 10, 2010
Here in this picture is Sal, Monica, Laura, Beto, NoNo, Liz, Marco and myself posing.
All the kids with their dad's .......
All of the guys had fun laughing and reminiscing of good times and all they did. They would all want to get together every time they would see each other. They would make comments that let's get together and BBQ and bring all the family. Till I go tired of hearing them and I made it a point and called everyone and they all came to the park and had a great time. Who knew that this would happened after so many years .....that I would be the one to call them to get together...if someone would have told me that 20 some years ago I would of thought they were crazy...funny how things come about....
The smiles just show you that they all had a great time! Marco especially had a great time hanging out with his old buddies.
Monday, August 9, 2010
DLP posing while we wait for the bait to be placed in the holding tank on the boat.
Nito holding a Mackerel as he does a catch and release
Nono finishing up his breakfast burrito on the boat.
Here are the boys as we arrive at 3am to the 22nd Landing
I haven't written in quit a while so I will try to update this blog up to were we are now. I will be going back in time after I get some pictures of DLP's 16th birthday when I get the pictures to show you. Marco has been doing well.
Sunday, June 20, 2010
Happy Father's Day!
Dad, you are the best hands down. No one can compare. I am so proud to have you for a dad. My mom sure knows how to pick em'. You have done such a great job raising Matthew and I (with help from my mom). I don't think anyone has ever had a dad that was so caring, modest, strong in heart, most intelligent, and a tad crazy. But I'm glad that it's Matthew and myself that have you.
Thank you. Thank you for always being there for me when I need you. Thank you for giving me the opportunity go explore new places, and giving me the motivation to do things. Also Thank you for entertaining me for the last (almost) 16 years. I have learned a lot dance moves from you, most of which I may never use out in public. You always know how to make me laugh with your silliness. Although we have our ups and downs I know that no matter what you will always be there for me. I appreciate all you do, thanks dad. Happy Father's Day.
Happy Father's Day! Dad....Thank you for all the things you have done for me. For taking me places for getting 100% on my tests. Wetting me wth the hose, even when I don't want to get wet, but it's ok I like it... I guess. Oh and for letting me use your computer all the time. I love you a lot!
Happy Father's Day!
The Greatest Dad EVERRRRRRR! I love that you are the dad that everyone would want to have as their own but I am lucky and proud to have you as our kids DAD. All I wanted for my kids was someone who would spend time with their kids, weather it be hanging out or just sitting watching a TV Show and appreciate the little things in life. You have always been their for them and that is something they cherish. I love you for being the GREATEST DAD EVER!! You know if means a great deal to me when I can say that. Thank you for all you do for our kids.
Thursday, June 3, 2010
This morning Marco didn't want to attend this event he didn't think it was something to celebrate I suppose it could be true but I would like to think that it's a day that we celebrate the courage and the tough fight that he as well as million of others have to go through for NO REASON at all. It's a day to see how many other survivors have gone through hell and have fought to come and say I am a SURVIVOR!
This is a big deal... this celebration is not one you think of like a birthday or retirement, it's a you have survived a life of hell for 3 years. You have gone through 2 types of hardcore chemotherapy's , gone through all the nausea, you lost all your hair twice, you have had 5 MAJOR surgeries without knowing what the outcome would be. You have fought through all this and yet at the end of the day you are a SURVIVOR you are the one who has tolerated all of the above and them some not mentioned. I do celebrate in my own way that I have you hear with us after all this shit you have gone through , so yes you are a SURVIVOR and one of the strongest men I know. So I want to thank you for going today as a survivors who has stood up to cancer and fought with all you have to survive. I thank you for fighting Marco ....we love you very much!!!
Enough said....I will post picture if they send me one later....
Tuesday, May 25, 2010
We have been attending more family functions which is a great switch from being at City of Hope. Hanging around family and friends has been good. Marco has been feeling well to be out and about in a boat. The kids will be getting out of school for summer vacation tomorrow and we are excited. Looking forward to this summer and see what it will bring.
Here is Machini with his classmates performing a play all about Dinosaurs. I
it was awesome, they all did a great job.
Machini was so excited to show us his performance and we arrived with
about 10 minutes to spare.
We had attended Jaylen's Car Wash Fundraiser to support the NASCAR Day Initiative. The four year old little boy is a heart patient at Loma Linda and he wants to be a NASCAR Driver when he grows up. And the best part was that we got to drive on the track to dry our car off.
It was amazing! We could of gone fast but we had to stay to the speed limit. We had an amazing afternoon with Spaghetti dinner that was served at Machini's school. If the photos look bright it's because Marco decided this would be the best time to play around with the camera settings....
I had leveled the yard as much as I could and started to lay down some top soil with
Marco telling me where to go and how to do it.
Who knew a few plants would look in the back. We should of done this along time ago.
Thanks to Medicated Man who came out to help put these in.
Marco has been keeping busy with house repairs and yard work .....learning to limit himself on what he can and can not do. He is still recovering and taking it easy. He has been slowly feeling better. Looking forward to see grass growing in the desert sand. Two weeks after laying out the grass seeds we didn't see anything growing so we did what anyone else would do .....we did it again and planted seeds to see what would happen. Pictures to follow. So far ... all is good.
Saturday, April 17, 2010
Who knew after having our coffee this morning we would end up at the Auto Club Speedway for the Petty Driving Experience....HOLY SHIT! is what I thought when Celi call this morning and asked how Marco was doing...I told her he was feeling better slowly but surely. She asked if I thought he would be willing to meet at the track and I told her I didn't know. So I went to ask Marco what he thought and he said YES! Well we left the house like bats out of hell.
We met Celi there and before you know it we were gearing up for a ride along. The excitement kicked in as soon as Celi asked if I wanted to get in too....didn't take me long to say HELL YEAH!!
Geared up..helmet on waited to be called and them we got into the car and off we went and after a green and checkered flag we had an awesome ride , a once in a life time experience, the adrenaline was on high and we didn't feel pain before or after. This would have to be a major highlight in our Nascar experience. Thank you ! Thank you! Celi we appreciate it all....it was even better spending the day out there with you guys.
We even had a chance to be in a segment for Univision channel 34, an interview that Celi was doing at the track which will air in May as soon as she lets us know when we will let you know so you all can see it too. AWESOME DAY TODAY!!!
I was so happy to see a great big smile on Marco's face. He was looking better after we arrived too. Tia Mona said he looked like shit when he got out of the car and his face just lit up like a kid at Christmas time before getting into the car. Very proud to see that nothing is going to keep him down ....Marco you took a major step forward in your recovery today and I was amazed to see the super strength you have and the determination to get better fast.
All antibiotics are now done and he is looking great....his hair is now dark and coming out in full force. Still need to take it easy but is doing great over all............
Monday, March 29, 2010
One of the medications will be finishing tomorrow and two other ones will be done in 7 more days. Frustration starts to kick in and it is understandable ....leaving the damn hospital only to continue hospital hours in your own home sucks.
Tomorrow we will be going to COH to have them remove all 33 staples on his left side and hopefully take out the drainage tube he still has in place. Which we think may be the cause of added pain to that area. A CT Scan will also be done to check his lungs and blood drawn for lab work. This infection has really made us uneasy and this time around was really hard for a speedy recovery but slowly but surely.
As for now he is still on a slight isolation and getting his rest. Momma M and the girls came this weekend and even though they stayed for about an hour :) she made a pot of caldo de pollo which was yummy. Marco seemed a little tired but talk a little then went to rest. Thank you for the visit and understanding that he still needs his most needed rest to fully recover.
It's overwhelming and scary at times to see everything he goes through. From the surgery, the side affects of all the medication which he needs so he doesn't feel the pain, the severe infection he had and to deal with all the chills and fevers and come home to more medication and side affects as well with hardly any rest for now.
One day at a time.......
Thursday, March 25, 2010
The home nurse came yesterday to make sure I was going to be ok with giving Marco his IV antibiotics. Once she saw I was fine she left and I was on my own. Today will be a whole day that I will be infusing the IV so, so far it is going well.
Still on antibiotics one of them one every 8 hours and the other every 12 hours thru IV. One by mouth 4x a day plus pain medication as needed. He has been doing well....and I think I have been doing a hell of job doing the infusion for him. lol
Marco has been eating better at home..Salt-n-Pepper and DLP had some chicken soup for him when we got home yesterday and I made some pork with green salsa and rice and he tore it up you would have thought que lo tenian amarado. The food has been going down smoothly so that is a good thing. He is getting around the house just fine.
He had some oatmeal, toast, yogurt, and apple sauce this morning with some orange juice and canela seemed to go down. So off to a good start I would say...
Still tired and with some discomfort as he says on the surgery side and I still have him confined to the room till his stomach is feeling better just for house precautions. Which he is doing better.
I will keep you posted....:)
Wednesday, March 24, 2010
The kids were excited to get the text this morning and so were many of you.
Tuesday, March 23, 2010
Marco had been walking around the floor today and the last walk the PT took him off the floor to the new PT room with all the bikes so Marco took it upon himself to tell the girl that she could use any of the equipment she wanted. So she said you want to get on the bike and Marco said yes. Ten minutes later Marco got off and walked back to his room. My jaw dropped to my knee because I missed it , I was waiting for him in the room then ran to the bathroom and when I came back he had just arrived from his tour. Unbelievable the things he does. GREAT JOB HONEY!!!
We just want to go home and see our kids we have been missing Machini since Monday and DLP since yesterday. We love and miss you guys. The phone is just not enough, hope to see you guys soon.
It's been a very long, exhausting day today with test and nurses coming and going. We will be going to sleep early and hope Marco has a good night tonight with out waking up to much.
So today it's about 10:45am and they will taking Marco for another ultrasound of his right leg because his leg was very swollen more than the normal so just for precautions that there is no blood clot they will check this morning. Marco is still having severe pain on his left shoulder since day one after the surgery but has been tolerating the physical therapy movements as well as he can tolerate them.
Dr. Grannis came in last night and checked up on Marco and said he was glad all has gone well with the surgery but we still have to keep in eye on his intestinal infection that he has to make sure it doesn't turn into a more serious problem so he is to stay on the antibiotics at home for seven days and if he feels any pain or is still bloated in a week he is to come back to get checked right away. He again told us that all the labs looked good and there was no cancer at the margins so again very happy to hear that Marco is cancer free now.
I think all would have gone well after the surgery if Marco hadn't gotten the severe intestinal infection he would have been recovering better but the very high fevers and chills not to mention the scoots just didn't go very well for him. So now we continue with our one day at a time and focus on getting Marco home to fully recover in his own room , bed etc, etc......
Can't say thank you enough to all of you .....we truly appreciate everything....for the hotel stay that went over the one to two days turned out to be a six days. For washing my dirty clothes or else I would have been a nasty ass walking around COH.
For taking Machini to the Japanese Garden, Rose Garden, the Jewish Temple or just laying in the grass as you froze your ass off cause he was asleep on your jacket.
For staying with DLP who didn't want to leave the 3rd floor lobby to be closer to her dad. Even though she scared the hell out of you when she woke from a deep sleep and scared everyone in the lobby cause she has sleep texting syndrome and didn't even know it.
For running back and forth to get us something to drink or eat and for all of the well wishes, thoughts, e-mail, texts, white envelopes support, snail mail, calls and for the most important thing that has helped us through all this ordeal, the one true source that helps us get over all the shit we go through is all the positive vibes from the positive people around us. Thank you!
Monday, March 22, 2010
The infection specialist came into the room to do an exam gave him a list of what to look for at home and what to do just in case. The cellulitis on his lower abdomen will be watched as well seems like it is more light pink than red. We will also be taking precautions at home for the next couple of days the basic washing hand constantly and using anit-baterial solutions. The doctors let us know that the precaution of isolation is to maintain a clean barrier of our clothes to control what we bring in and what we take out. Again for precaution.
Marco is very excited he will be going home tomorrow and get the much needed rest from being in the hospital and in his own bed.
DLP was very excited when I gave her the news this morning .....as was I.
Thank you everyone for all of your support and well wishes and thoughts. We do appreciate everything everyone does for us.
Marco's temp came down to 99.9 at about 8pm today. Yay! Finally I see a glimpse of a full recovery from this severe infection he has in his belly. I was able to let out a sigh of relief and feel my shoulders hurt from all the stress this week has been not to mention the weeks before surgery. I feel it all starting to catch up with me. Marco looks good in his new ISOLATION ROOM huge room with one room to change into all the gowns you have to wear then you can go into his room. All for quarantine and everyone's precaution. Today, I say him feel better that he was out of ICU and into a reg room his face lit up. It makes a huge difference. Tomorrow we will be talking to the doctor again and see were he stands and what all his labs say. As for now he is glad to be out of ICU on our way out and hoping to have him home soon to finish his recovery.
Sunday, March 21, 2010
His potassium looks good but his red blood cell were low so he is getting a blood transfusion this morning it will run a good portion of this afternoon. Over all he is doing well as he can. The medication makes him very tired and gives him hallucinations.
He is trying to keep at least one eye on the TV to watch NASCAR but the medication making his eyes heavy. I have to call out his name and yell focus he doesn't want to miss the race.
Will be staying another day in ICU this time around is turning out to be expensive with the hotel,they need to be sending people home who are feeling better so that I can stay with Marco in a normal room.
Thank you to Moshura's sister, Leezy120, for helping with the hotel stay and everything else to my Momma and Momma M we really appreciate it from the bottom of my heart. Wanted to thank everyone as well for all the well wishes and thoughts and positive vibes.
Will keep you posted on what is going on later.
Saturday, March 20, 2010
Your F'n kidding me. So, I told Marco and he took the news with stride. So here comes the PCA with a bag full of yellow gowns that I and the nurses had to wear. With a warning to wear at all times in the room and drop in a certain container. Holy Shit just like in ET or some kind of weird movie like that. So no one is allowed in.
So the whole day while we waited for the test to come back I had Marco do his exercises that they gave him to do. He has been doing his breathing and fighting the chills and fever all at the same time. The medications he is on are strong to help with the pain but it also has his mind going 100 miles an hours but one or the other and the medication is for all the good reasons.
Just seeing him like this and all he has gone through since Monday breaks my heart but it seems like they have a handle on it now. This is just part of a reality we are faced with everyday that at any given time anything could be triggered and we just have to deal with it as it comes as scary as it may be ....we face it and move on.
I told Momma M today we have been dealing with so much this week that I had forgotten to stop and be joyful that Marco is now cancer free, in remission. There is absolutely no cancer in his body as of Monday and we haven't had a chance to breath, sigh, cry, hug, enjoy yet. The emotions of this week has overpowered that moment for us but we will be happy with just having the chills and fever go away and that is enough for now we can hug and everything else later.
I think I am noticing life now like Forrest Gump ...."Life is like a box of chocolates...you never know what you are going to get." and its so try it's like you bite into one chocolate and it's all good and all then maybe the one you bit into a couple of days later you bite into it and you spit it out and say what the hell were they thinking making that shit and you put it back in the box ...why we do that I don't know maybe for someone else to experience that nasty ass chocolate or just to see their reaction maybe but it's always something new everyday good or bad.
With that said Marco's chocolate is a nasty ass one, so we are just waiting for him to try the good one and get him home.
Meanwhile quarantined!! Don't know till when will update later.........
He will be needing a blood transfusion this morning his red blood count is low. His salt has been low but they have stopped giving him sodium which just makes his taste bud react horribly. Hasn't been able to eat because it all tastes like over powered salt.
His white cells have been coming down drastically which is good. So now they have given him 3 other antibiotics.
Today we will see what the test results are for the test that where done yesterday.
Friday, March 19, 2010
The Infection Experts have been called to take a look at his case and pin point where the infection could be coming from.
Marco has had no sleep since last night all night up with fever and chills. Physical Therapy took him for his walk and then arm movements. The took chest tube line out and checked to see if there was any infection at the site but all was clear. He was taken off oxygen to have him feel more comfortable and not so agitated. They are doing a ultrasound of his legs to see if there is a blood clot just as a precaution. Just try to find what is going on.
So just taken it day to day to see what happens hoping the chills and fever will subside and give him much needed rest he needs.
It's not easy seeing Marco go through all this....usually we have answers right away and this time the doctors seem almost APENDJADOS to what is going on. Tomorrow is another day....
Thursday, March 18, 2010
This morning when we returned Marco was doing better, his x-rays came back clear and his fever has stabilized. Test results should be coming in today, will keep you posted.