Thanksgiving, 2010

Yesterday I went to Terry’s sister Jacki’s house for Thanksgiving dinner. We were joined by Terry’s other sister Camille and her husband Bob, and Terry’s niece Cheryl with her husband Dan and daughter Gianna. These people have been family to me for the past twelve years and spending the day with them was special. I was reminded of all the things I have to be thankful for. Earlier in the week I had received an invitation from my brother Tim to join him and his family. So after dinner I went to Tim’s house where he, his wife Kathi and daughter Lindsay were hosting a large gathering of Kathi’s family and ours. Although they did a great job, what really made this visit especially nice for me was that I had not been to their house in more than ten years. Tim and I have been slowly making progress towards mending our relationship but this was what I hope is then first step in repairing things with the rest of his family. Lindsay seems to have become quite a baker. She made an apple/blackberry pie and a pumpkin cheese cake. Everybody raved about them. Unfortunately I had to enjoy eating them vicariously because my taste buds are virtually nonexistent right now but I did enjoy seeing how much they were appreciated. Topping off the day was something I’ve been waiting a long time for, a group hug with my mother, sister, and brother. Below is a picture of the four of us but you can see the actual hug on my bucket list. Use the link on the right. So much to be thankful for. Carry on. --------------------------------------

Mixed Feelings

I’m experiencing conflicting spiritual feelings lately. I’m not talking about good vs. evil but rather what the messages I’m “hearing” mean. It’s very complicated so I’m not going to try to discuss that now. Instead I’ll discuss what I think are medical conflicts. I’m concerned about the fluid in my abdomen, a condition called ascites. I think it’s a bad sign. It’s also uncomfortable so I’ll talk to Dr. George tomorrow to explore doing something about it. On the other hand, I’ve been having more chemo side effects recently. The last time I had side effects like this the chemo worked well. I hope it means that this chemo regimen is working. I’ve been more tired and weak lately. This morning I said to Terry “My eyes and nose are flowing, and my hair is falling out again. Things are looking up!” I am well aware that the side effects a person experiences or doesn’t experience and to what degree has no scientific relation to the efficacy of the chemo. But I’m not a science experiment. I know that I got the best results when I had the most side effects. Dr. George said that it usually takes two treatments before you can judge the efficacy and tomorrow will be my second for this regimen. I’ll have to wait three weeks after that to see blood results. My plan is to enjoy the three weeks. Please continue the prayers for Robbie LaSalle. He is recovering from surgery, a very difficult process. He's a tropper, has a very supportive wife and his pathology results looked good. But it's very tough and will continue to be for a long time. Carry on. ------------------------------------------

Catching Up

In my last post I indicated that I knew a little bit more about my situation. On Monday I went to see Dr. Jabbour who is the radiologist who would have determined the dosage for the SIR Sphere treatment had that plan not been canceled. I wanted to see if she had any ideas. My daughter Heather was not working that day so she met me there to keep me company. It was great having her. We joked and laughed most of the time. She has an awesome sense of humor and the time flew. I didn’t want the doctor visit to end because the would mean I’d have to leave Heather. But I had another appointment back up north. At one point the doctor had me get up on the examining table and lay back. She said she was going to lift my shirt and asked me if I was OK with that with Heather in the room. I said yes. Then she asked Heather if she was OK. On the wall was a chart showing a diagram of the male prostate and reproductive system Heather pointed to the chart and said “As long as it doesn’t involve anything on that chart I’m OK.” Dr. Jabbour could offer no other options for me except to continue with chemo. I wanted to get her opinion on some things so I asked some direct questions. First I asked her if the fluid in my abdomen could be drained. She said yes but they prefer not to because it will come back and each time they drain there is the risk of infection. I asked her if the fluid was a sign that the end was getting closer. She said yes. Then I asked her how long she thought I had. She said probably not a year. She said that it’s not days because I looked too good (do you think she was hitting on me?). So she said probably months. At that point Heather said “Well I guess I’ll have to buy you a Christmas present”. Everyone laughed and after a brief pause she said “But I’ll keep the receipt.” Perhaps the most revealing indication of what Dr. Jabbour thought came at the end of the visit. She is a very quiet and reserved person whom I had seen only twice before, once for a pre-procedure check up before the spheres and once on the way into the procedure room. As we were leaving she came over to me, gave me a big hug and said “Good bye my friend”. We left and I headed to my appointment with Dr. George, my medical oncologist. What I was thinking about most was that I was sorry to be leaving Heather. I enjoyed her company so much. Dr. George was a little more hopeful. First, she said she would arrange to have the fluid drained whenever I wanted. We’ll wait for it to become more uncomfortable. Next she said that the new chemo regimen I started on November 1st (Epirubicin, 5fu but no Cisplatin) has had good results in Europe. It’s not used very often here. I had a “months” prognosis before and I lasted more than two years with Dr. George’s help. We’re going to try to do it again. On Saturday Terry and I went to our church’s Mass for the anointing of the sick. I’ve written before about what a moving service it is. There were four priests, each assisted by a deacon except for one who was assisted by a nun. Apparently there were not enough deacons available. When it came time for the anointing a priest and a deacon went to each person in attendance and prayed over them. Then they came back and anointed each one with the oils. Now try to appreciate the significance of this. I got the priest without the deacon but with the nun. The nun was my angel, Sr. Sylvia. If you don’t remember Sr. Sylvia’s role in my journey you can look back to my post of January 26, 2009 titled “A Miracle”. Later that day we had dinner guests and Terry, being Terry, went all out with the cooking and preparations. We were visited by our good friends Carol, Denis, Dina, Dina’s mother Barbara and Fr. Flanagan our former Pastor. I addition to having a good time Fr. Flanagan anointed me. That made twice in one day. Seems like a winner to me. Carry on. -----------------------------------------

It's All Right Now

I have found out a little more about my present situation but I don’t want to talk about that right now. The last time I posted I asked for your prayers that I have enough time to finish the things I need to finish. Those prayers, and thank you for them, have been answered. But as always they have been answered God’s way. He knows what’s best. The most important thing for me is to be sure, as sure as I can be, that my children are headed down the right path in life and that they believe and understand some things that I think I have learned. I have known for a while that my daughter Heather shares my values politically and economically. We have a similar sense of humor. Recently we had a discussion about death, Heaven, and the afterlife. We are in sync spiritually too. My biggest concern with Heather was that she be happy. I will never forget how happy she was on her wedding day and she’s still happy. I’m counting on that lasting forever, thanks to her husband Ed. My son AJ is tougher for me because he’s not easy to talk to and there is so much I want him to know. I have said it before and I think all my other loved ones understand when I say this. AJ has given me more joy in life than anyone. We spent countless days together as he was growing up and they always filled me with happiness and pride. AJ was always supportive of me, even when I was scolding or punishing him. AJ was all I had as an immediate family when I was going through the divorce with his mother. Friday night AJ sent me a letter which I will share with his permission. The first time I saw my father cry was when his friend Mr. Kahn died. I don't remember exactly when it was or how old I was. But I do remember him crying in the bathroom. I walked away and went up to my room completely baffled. Here was the strongest man in my life crying and looking so terribly helpless. I had no idea what to think or do. But I realized then that it was ok to cry, no matter who you were. I don't cry very often. And when I do, there is usually no one else around. I like to think that I can handle myself better in situations such as this. But the truth is, when I read my dad's blog, or when i see him struggle with things that used to be so easy for him, or when I think about life without him, I cry. And I cry hard. But I know it's ok. Because I saw my dad do it and he's the strongest person I know. I'm not one to talk about emotional things such as this with anyone. Whether it be my father, mother, sister, girlfriend. I don't know why, but I feel that sometimes I could talk to a stranger and tell him so much more than i could ever tell anyone in my life. Which is pretty much the motive for this email I am sending to my dad. I fear just as he does, just as my family does, that time may be running out on us. And this may be the only chance I get to tell him what he was to me. When I think of my dad, I remember many things. Soccer is my favorite memory. He drove me to hundreds of tournaments, miles and miles away, weekend after weekend. He showed up at high school games in the middle of his work day. He bought me the best gloves and cleats and shirts, and training that he could buy. And although he kicked a ball like a guy who's shoes were on backwards and eyes were closed, he always had the right advice for me. He was my best trainer. He was a much better baseball player. And I remember all the catches we would have in the front yard. It was a good time every time we went out there. Sometimes he would take me out only hours after yelling at and punishing me for some completely ridiculous thing i just did. It felt like it was his way of saying "Son, you're a moron for (insert dumbass thing I did here). But I still love you and you need to know that." My father always pressed my sister and I to study study study and get good grades. It worked for her but not so much me. She is the college graduate while I am still on Spring Break 2004. But nonetheless, he tried. He tried his ass off to get me to be a good student but I guess it just wasn't in me. But even when I missed baseball freshman year because of my grades and when i dropped out of East Stroudsburg, when I left County College, as disappointed as he was, he always reassured me that I would make it out ok. My mother may have been a bit more understanding in this department but it helped knowing that my father also had my back. My parents were good parents. Even though they didn't work well together and had two completely different parenting styles (like way way different), they were good. And I would never ask for any of them to be substituted. As difficult a son I was, I am a grateful one now. These past few years of been hard. I often find myself wondering if my dad will be at my wedding or meet my first kid. I doubted it many many times. But just as soon as I doubt it, he does or says something that makes me believe again. I have had bad feelings lately that maybe we are indeed running out of time. And I am just waiting for some good news. My dad took me to the cemetery the other day. He showed me where he will be buried, next to his father. I was ready to start crying. But I thought to myself, all those times my dad was the stronger one, I think I owe it to him to be the strong one now. I still can't look at him when he cries, it's just too hard. I have been diagnosed myself with Gastroesophogeal Reflux Disorder and I also have a hernia that I just found out about. It worries me knowing that pretty much everyone in my family has had or has cancer. I can't say I'm 100 percent in love with my chances of not getting it one day. The only thing I can say is that when my days are winding down, hopefully 100 years from now, I am as strong, as ready, and as understanding of the situation as my father is. My father is my hero. He always has been, always will be. He is the strongest most invincible person I know. He was my teacher, my coach, my critic, my partner, and my friend. And I will never forget him and all that he did to make me who I am. I don’t think I’ll ever finish everything I want to finish but it doesn’t matter. Knowing that Heather is happy and knowing that AJ appreciated all the times that were so special to me and that I had a positive influence on his life is enough. If God takes me tomorrow he will be taking me after having given me the greatest of gifts, my children. Carry on Heather. Carry on AJ. I love you. ----------------------------------

This Beast Is Fast

I held off writing this entry because is took me a while to deal with it. I thought I was preparing for another SIR Sphere treatment but on Wednesday the doctor who does it, having Tuesday’s CT scan in hand, called. He informed me that the treatment is now ruled out because of the risk/reward considerations. It seems the lesion/tumor in my lung is active again. Risking further liver damage is not wise because even if successful, the active cancer in the lung makes treating the liver rather useless. To further complicate things, the CT scan showed fluid in my abdomen which he suspects is coming from the liver. BAM. Things sure do change quickly. I still have an appointment Monday with the radiation oncologist who was to determine sphere dosage. I will keep that appointment just to see if she has any other ideas. Following that I have an appointment with my medical oncologist. I’ll see what she says, particularly about the fluid. I’m exploring clinical trials. Realistically, I think my only option is more chemo which hasn’t been working. If you are inclined to pray for me please pray that I have enough time left to finish the things I need to finish and that I have the strength to accept my fate and face it with courage. If you have only one prayer for now, let it be for Robbie LaSalle. He had his surgery and now faces a long, difficult recovery. Carry on. ----------------------------------------------------------

Busy Busy

The last couple of weeks have been busy with doctor appointments. And it’s not going to end for a while. It looks like I’m going to have another SIR Sphere treatment but I wanted to explore other possibilities first. The SIR Spheres may damage the liver and the procedure was not as effective as I had hoped the first time so I wanted to make sure there was not a better option out there. As I already reported I saw a radiologist about external beam radiation and he recommended that be left as the last option. Last week I saw Dr. Gannon, a surgeon, to discuss resection of the liver and radiofrequency ablation (RFA). He ruled out resection (surgically cutting the tumor out) because it would require that I be off chemo for an extended period. The surgery itself would weaken my immune system. He said that between the lack of chemo and the diminished immunity the cancer cells in my body would have an opportunity to run wild. He felt that surgery would shorten my life rather than extend it. Regarding the RFA he said it appeared from my most recent PET scan that the tumor was too large for that procedure. It’s hard to say for sure and he’ll know better when he sees the results of a CT scan which I’m having tomorrow. Dr. Gannon serves on a tumor board with Dr. Nosher, the interventional radiologist who does the SIR Spheres. He said they meet later this week and will discuss my case with the CT results in hand. Between the two of them, and I suppose anyone else on the board, they’ll decide the best approach. But it looks like it will be SIR Spheres. That of course depends on the tests I have to have done to make sure I’m fit for it, beginning with the CT scan tomorrow. I have an appointment early next week with the radiation oncologist who worked with Dr. Nosher on the last SIRT. She’s the one who determines dosage. She has to clear me for the next treatment. Today I started a new chemo regimen. It’s referred to as ECF which is epirubicin, cisplatin and fluorouracil (5FU). But Dr. George left out the cisplatin. Cisplatin is what causes the neuropathy and other nerve damage including hearing loss. She said that because I’ve been on it (or another platin such as Oxaliplatin) almost continuously for two years, it’s time to take a break from it. I think she’s right. The most common side effect of the epirubicin is mouth sores. I have experience with mouth sores from my very first treatments. It was a walk through hell. But I’ll do it if I have to. I have to go back there Wednesday for hydration and to be taken off the 5fu pump. I have yet another appointment next week with Dr. George’s office for an interim blood test to make sure my counts are OK with the new regimen. I asked Kelly, a chemo nurse, if they had any other patients who have been coming as long as I have. She said “while they’re living?” I said well they can’t come when they’re dead can they? She said only on Halloween. So I’m doing a lot of running around to doctors. Oscar had two vet appointments mixed in with another one on Friday so he’s going through it with me. Last week my brother Tim and I had the lunch we agreed to have. It was awesome. There was some serious discussion, some laughter and some emotion. It was a great step towards fixing things between us and I’m hoping for more. Please say some extra prayers for Robbie LaSalle. Rob is the patient who has two forms of cancer, adenocarcinoma and small cell, in his gastric system. He has reached a point where the doctors feel surgery may work for him. Tomorrow he goes for pre-ops and he’ll have the surgery later this week. They’ll remove his stomach, part of the esophagus, and perhaps more. This is very major surgery. He’ll have a very long recovery. His life will never be the same. But the hope is it will be a life. So we need prayers to get him through the surgery, have as easy a recovery as possible, and for success. It’s a tall order but God can handle it. Carry on Rob. --------------------------