Monday Night

Mark went to sleep early tonight with a headache. I thought I up-date everybody on today's doctor appointment. The doctor understands and completely supports Mark's decision regarding suspension of the chemotherapy. But (isn't there always a but . . .), he wants Mark to have a follow-up MRI to see what, if any progress, the course of chemo actually did. Now starts the familiar, depressing battle to find someone who will take our lousy Medicaid coverage for a MRI. The last time, it took us months of searching to find a way to get the diagnostic testing. You see, we have something the State of Florida calls - - - "share of cost" coverage. Since I am fortunate enough to be employed, Medicaid will not cover Mark's medical expenses until we pay the first $1,447 each month. When the case manager first told us that, my response to her was "If I had $1,447 each month to pay toward the medical, I'd buy Blue Cross insurance. I don't have $1,447 each month to dedicate to the medical costs." She didn't even try to be sympathic. She curtly told me basically to "take it or leave it." We have to qualify each month for coverage. Oh, and when they determine each month if they will "honor" you with coverage, they make no allowance for what your monthly expenses are (you know, food, electricity, rent, gas, etc). They simply take the base salary, look at their chart, and tell you what you must pay. I am lucky to have a good job. But in today's economy, one salary is even covering our basic needs. We pick one bill every month to skip and hope we can catch up next month.
So, when he told us that this morning, my heart fell. You see, it's June 30th. So, tomorrow, we start the new month and we have no coverage, unless the Medicaid gods decide we do. Most of the diagnostic providers won't even except Medicaid and those that do check to see if you have "met your share of costs" and if not, they won't schedule you.
Sorry this is so long, but I feel the need to rant. I'm not sure what we will do. I will start the endless task of making calls tomorrow to see if I can get anything scheduled. Last time, I found one place that would schedule it if I gave them the first $700 up front. Oh, yeah . . .like that fits my budget. But, we have managed to squeak along so far and I know that we'll figure something out. In the meantime, I go back on the anxiety express.
Thanks for listening. I needed to get it out. Mark treasures all of you who read this. We ask especially for your prayers and support as we start this new phase of his fight. We really will NEVER GIVE UP! Rebecca

Sunday Afternoon

"Gort: Klato verada nicto !" Oh yes! Spent this afternoon watching The Day The Earth Stood Still. What a great film! No computer images, fake action scenes, hell, they did it in Black and White! I really enjoyed watching it today.
BTW: Craig, we are very, very proud of you going to Yale. I could not be any prouder if you were my own son. My son passed Yale once in a car.
I'm having a pretty good day today. Yesterday I had bad headaches and nose bleeds. Every day is a new adventure!
Rebecca has cooked a pot roast and I have been smelling it all day. I hope I can get it down.
Have a great day to all! Peace and Love Mark

A Nice Quiet Saturday

Today has been good so far. Mark asked me to "guest" write tonight. He has had a pretty bad headache today and had at least one nosebleed. He is having both more frequently. But, he has so much more energy than last week. He is able to sit and talk with me, watch t.v., and laugh at the funny stuff. This Mark is more like my Mark. He even tried my not so successful attempt at spaghetti and meatballs tonight. And even had a few bites of ice cream with some fresh strawberries and blueberries on top. All and all a darned good day. We are settling in for the evening and getting ready to watch the Saturday Night Live show that he told you about. We will enjoy it. My love and thanks to all of you for being here for Mark. REBECCA

Friday Afternoon

FYI: Saturday Night Live is showing the FIRST SNL ever aired with George Carlin as host and Andy Kaufman. Don't miss it!
Today is a good day! I got a laugh from the Dust Bunnies and para sailing pictures, thanks Jen! Laughing is as great as my Mom's Chicken Soup!
I feel stronger. Once all the toxins are out of my system, I should be able to eat again. My good wife keeps cooking these dishes to get me to eat. It's driving me nuts!
I wish to thank you all for your support. I never expected it, but cherish every one of you!
There are 86,400 seconds in a day. It's up to each one of us to spend them wisley. I am learning this the hard way.
Peace and Love to all
Mark

Thursday Afternoon

Well, Rebecca and I met with Avow Hospice today and everything went quite smooth. They seem to be very nice, explained everything and answered all questions. I will see the Doctor Monday to OK hospice. To be honest, I knew the chemo wasn't working anymore and now it comes down to quality of life. I have two choices: The chemo makes me so very sick, but in the long run will extend my life an extra couple of months. OR: Stop chemo and get back to living, eating and loving my wife with the remaining time I have left. Hospice promised I will never know pain. There is a line from the movie Shawshank Redemtion: "Get busy living or get busy dying." I choose living. It won't be easy and to be honest, I'm scared to death (no joke intended) but it seems to me to be the best way to finish my life.
To all my friends, I hope you understand my decision and I wait to hear from you all. Your opinions are important to me.
Another saying: "when the wind shifts, it is time to head to port."
The wind has shifted.
May Peace and Love be with you all!
Mark

Wednesday Afternoon

I am having a good day today. The rain has stopped and the dogs are out from under the bed. I took a nap and dreamt of watching "Have Gun, Will Travel" while eating Moon Pies and drinking a bottle of Orange Crush. No, I'm not smoking any funny cigarettes, just a nice dream.
I wish to welcome Mike Golch and Saintly Nick onto my blog. It is such a comfort to know there are so many good people out there. I am going to try and have some soup and a sandwhich.
You are all in my prayers and thank you for taking the time to write to me. It means so very much! Peace be with you all and much Love from me to you! Mark

Tuesday Afternoon

Today has been a hard day. I broke the news to my Mother that my Cancer is terminal. Like all mothers, she refuse to accept that. I could here the quiver in her voice. It broke my heart. My Dad, who is in bad shape is 93. We decided not to tell him. He's happy right now watching his beloved Mets and Yankees. There is nothing he could do to change anything, so I say let him be.
Mom wanted to fly down ASAP to Naples, Florida to see me and I talked her out of it. Too hot and muggy. We decided that she will come in September, when it's cooler.
I have made some new friends! JC, Jennifer and Travis. Thanks for your sound advice. I see Hospice as a way of releaving some pressure off of my wife Rebecca. Thanks for being so straight forward and honest. It means a lot to me.
To Craig and Nancy, my backbone since day one of this ordeal, thanks for always being there for us.
Well, it is thundering and lighting outside right now, so I better shut down.
Peace be with you all and much Love from me to you!
Mark

Monday Afternoon

Well, the Doctor wants me back in Chemo for the next 2 weeks. He also wants me to speak to a Hospice about home care. I am getting weaker, have a hard time walking and any traveling in a car is draining. It is hard traveling down a road and seeing a "Dead End" sign in front of you. It is something I must prepare myself for mentally and physically. It is so very hard on my good wife Rebecca. I wish her no pain, but she is with me always and bears the brunt of this whole nightmare. The Doctor gave me stronger pain pills to take for my worsening headaches. I am doing my best and will never give up! Peace be with you all and much Love Mark

Sunday Morning

Another sleepless night. I have not slept more than 3 hours in a week. Headaches are still with me and now I'm vomiting again. Tried eating, but hard to keep down. Back to "Boost" and "Ensure" again. The Doctor gave me pills, but I hate taking them. They put me in a fog. Hi Craig and Nancy. Hope all is well. Peace and Love to all Mark

Friday Afternoon

Well, I have to see the Doctor on Monday. More tests, more needles and more pain. I feel like I'm in a hole and my voice is just hollow. This is never ending. I can feel myself fading away a little each day. Never to be as good as I was yesterday. Only slightly better than tomorrow. Peace Mark

Thursday

What a day. Maybe it's the rain, but my headaches are very bad today. It feels like someone poured a heavy liquid on my head and it is leaking down my face. The pain is staggering. I want to write more, but I am having a hard time with the llittle I have already written. I will try more later, if I can. Peace and Love to all Mark

Wednesday Morning 6 AM

Big lighting storm this Morning. Hard to sleep. Dogs going crazy.
Still have a pump in my chest until I see the Doctor on Friday. He will decide then if it stays in or comes out. I'm getting close to my final chemo. I can only take so much! It is causing my body to react in ways I will not describe on an open blog. To Nancy, in a week or so, it will get worst. BE PREPARED! Have a trash can close, Maalox or other over the counter pills for irregularity. Try "Boost" or "Ensure" when it becomes hard to eat. I like the Butter Pecan. Multi vitamins will also help if taken now once a day. Please stay POSITIVE! It is a LONG and bumpy ride and your going to need all your strength for you and your Mom.
I am hear for you Nancy. You're all my in my prayers.
Peace and Love
Mark

Monday Night/ Tuesday Morning

Can't sleep. Chemo was a rough 6 hours today. The Doctor told me they have to be more "aggressive" in my treatments. The headaches are getting worst and I really don't want to start using mind numbing drugs. I got home in time to watch Tiger Woods work his magic in the US Open, then slept for a few hours. Holding down food has become hard to do. Everything taste metalic and has the flavor of wet cardboard. I will hang in there! My best to Nancy, where ever she is. Peace and Love to all Mark

Saturday

Today is a hard day for me. I am starting to realize the finality of this whole trip. I am supposed to just stay calm and let this Cancer just eat away at me? Should I be yelling or running around trying to find a cure? I feel totally helpless. Just sit in my house day after day after day doing the same damn thing! Waiting. With gas so high and money so tight, there is nothing I can do. Just sit here and feel comfortably numb. Waiting. My Dad is 96 and in bad shape. I wish I could see him again. Just talk to him one more time. He's 1500 miles away and I can't afford the trip. This makes me sick to my stomach. I want to yell and cry. Is this pain really worth the extra few months? I sometimes wonder. I feel lost and alone.
Is anyone out there? Hello? Anyone? Mark

Friday Afternoon

Another day of headaches and IV's. Then the car breaks down! Sometimes it is hard to stay positive. I just would like one day, just one, when I feel no pain and can walk outside and enjoy the sun! So many things taken for granted over the years. The simple things mean so much more now. Stay positive! Never give up! Peace be with you all! Mark

Thursday Afternoon (well, evening, really)

Really rough day. Couldn't keep anything down. I'm very tired and feeling weak again. I guess all the fluids they pumped me full off have left me again. I see the doctor tomorrow morning. Hard to guess what he will say. But, I WILL NEVER GIVE UP!

Wednesday Morning

Another day of IV's and needles. I feel like a pin cushion. 5 hours is a long time watching this stuff loading in your chest port. Nancy, have a safe trip. We are here for you with any questions or if we can help in any way. Our prayers are with you and your Mom. Stay positive and show no fear. Remember: NEVER GIVE UP!

Tuesday Morning

The Doctor stopped my chemo this week. He is loading me up on IVs for the rest of the week because I lost 23 pounds in 7 days. Still very weak but I'm trying as hard as I can. To James and Marie... have a great time this weekend! Leave all that digital crap at home and ENJOY each other!!!! Believe me, you don't know what you got until it's gone. Well, that's my 2 cents for the day. Thanks for the use of the DVD player! It makes the 5 hours go fast durning chemo. Got to go make the coffee and watch the Sun come up. I enjoy the simple things more now. Rebecca is snoring, hate to wake her.... ah.. what the hell. Peace be with you all! Mark

Monday Morning

Now I know I'm sick when my wife makes her famous short ribs and I can't even think about eating them! The loss of taste and smell is just another brick in the wall. Thank goodness I can get "Ensure" and "Boost" down. It gives me the nutrition I need to keep going, along with multi-vitamins. Today is chemo day again. More needles and more hours of tourture. I guess thats all part of this illness. Keep going forward! Peace and love to all! Mark

Saturday Morning

A night of Hell. All the Toxins in my body/colon decided to leave at 2 AM with no warning. An absolute mess. I don't know how my poor Rebbecca is putting up with this. I could never do this alone. Never. This round of chemo has been brutal on me. I start again Monday for another week. I wish I was a bit stronger. So very tired. NEVER GIVE UP! Let me close on a high note.... Happy Birthday Marie! May your day be a beautiful one! James, congrats on new clients! You deserve it! Peace be with you all! Mark

Thursday Evening

I must say that this round of chemo is brutual. When he went through the first round last spring, Mark seemed to recover between sessions and have some days of relative comfort. Not this time. He continues to be so very tired that even getting out of bed for an hour or so is a huge chore. He isn't eating anything - we're back on the Ensure. And, the vomiting - oh, God, the vomiting. We have one more round to go before the doctor calls a halt for a while to measure the effect on the tumor. My poor, poor miserable husband. All your prayers are really important now - so keep them coming. We love you all. Never Give Up! Rebecca

Wednesday Morning

Very hot day already. I have no strength to battle this heat. I'm sleeping more than I should, but can't help it. Just to tired to move. Even in sleep, I'm up every 2 hours to vomit or some other vile reaction my body has. My eyesight is failing more than I thought it would. Just a bad day in general. Going to lie down and save my strength. I will NEVER give up! Peace and Love to all! Mark

Tuesday Afternoon

Today has been rough. I believe the heat has a lot to do with it. I have no strength at all. Headaches are back with a vengeance.
Today, I wish to express my thanks to my wife Rebbecca. Sometimes we become so involved in our own world, we forget the important things around us and how it affects those closest to us. Every time I cough, sneeze or just sigh to loud, she is there. Weather it is 4 in the afternoon or 4 in the morning. I know what is going on in my brain and body, Rebbecca has to guess. In guessing, like any mother or wife, she has the tendency to blow things out of proportion. I guess that's why I love her so much. So, the next time you feel bad and you look up and see that famillar face staring at you, remember they too are going through Hell ..... holding your hand!
Peace be with you all! Mark

Monday Morning

I am very happy to say, that this week I have made some new friends! Ellen and Dawn you are in my prayers. Nancy, we consider you Family. Never forget that. It is a lousy way to make friends, but friends they are and will stay! I go Tuesday for a B 12 shot and Friday for a shot to keep my White Blood Cells high. Never ending shots. I'm a walking pin cushion.
I have been asked how do I keep up writing? I have no choice. It is either express myself (good or bad) or just lie in bed feeling sorry for myself. I will NEVER give up! I will fight until the bitter end. Every day I write to new friends. I am not alone in my battle (or my friends in theirs). Somehow, we are all connected. We can feel the pain and suffering more acutely of others, going thru our own hell. I am proud to call all my blogger's my friends. Peace be with you all! Mark

Sunday Afternoon

Had a surprise visit with Becca and James today. A beautiful bright spot in an otherwise bad day. So very tired. No appetite but throwing up a lot anyway today. I just don't seem to have any energy. Its getting hard to even come from the bedroom to the office to write here. Hopefully next week, after the medicine has run its course through me, I'll get some energy back. Thanks to everyone reading this - you give me a boost to keep going. Peace - NEVER GIVE UP!