Thursday, September 23, 2010


This is an interesting article Marco and Marie showed me while we were at the hospital for Marco's chemo. Thought I'd post for everyone else to read too.


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

Started 2nd Chemo Cycle

Monday, Marco started his 2nd chemo cycle with Gemzar which was infused in a one and a half hour session at COH. It pretty much went smoothly.
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 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

Starting To Feel The Side Effects

Well today is day three after the last chemo was given for the first cycle. Marco woke up this morning not looking good but kept saying he was alright. Yeah, I know what alright means. He has been dragging himself from room to room. He looks so exhausted today and in lot of pain.

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 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!