Billy 1 chemo 0

Yesterday was day 1 of chemotherapy and I entered the program skeptical and less than enthused. My nurse spent the first 20 minutes explaining all the side effects the 4 different drugs they use have. There's the old favorites vomiting and diarrea, mouth soars, flu symtoms hot flashes, fever, body soars nausea and general tiredness. Then they add the hair loss,eyebrows, eyelashes and facial hair...nice. Then they discuss the possible weakening of the heart, lungs and liver and that was a joy. Now it was time for me to get up and take a walk to clear my head. I managed to force my way back to chemo central and sat in my recliner amongst the dozen other victims whom all seemed to be at peace with their plights while I was not, probably because I was day 1. As the IV was put into my vein and the poison eneterd my body I knew my life had been forever changed. Today I am a cancer victim and shortly I will be a cancer survivor. At least that is my plan. Regardless I know I'll always have that label "C" next to my name but you know what who cares. When I get back to 100 % I'll be back on the pitchers mound and I will be kickin all your butts all over again and how sweet will that be. After a long 7 hour day I wobbled home and had those 2 smiling faces waiting for me Joey and Jayne my 4 legged joys just dying to go to the park so off we went. I managed to keep the dogs minivan on the road enough to get us there and they had fun as always so it was worth it. Later I had a little soup and some tea and got some sleep but not much. I did not vomit,no fevers or shakes , other than general tiredness really nothing at all. Hence i feel like Day 1 I kicked chemos ass so it's Billy 1 chemo 0. Take that nurse Ratchet. Finally I want to thank all you guys who have been supporting me the phone calls mean so much. I have gotten many unexpected well wishes from old friends like Donny Mason, friends in Colorado, Virginia and North Carolina. Old high school friends like Diana and Robby Takelszyn.--oopponents like Stumpy and Jimmy Dowling thankyou. My close friends whom there are too many to name but you know who you are...thankyou. Wendy and Zill whom I'd be lost without you've both done so much. And my new friends rom Sloan Kettering Steve who has brain cancer and Domenica who has become my email angel...you stay cancer free for that beautiful family and for yourself you are such a kind heart and I thank you for the encouragement. And of course my brother and sisters you all have been great and no Jacqueline I'm not a dork you are. I love you all and I hope to be 100% by Thanksgiving. Next chemo is 2 weeks and I plan to make it 2 zip. We'll see.

Thank you Billy

And so it begins... chemo day 1

8 hours in the hospital today. Normally it wont be that long, or so they tell us. Billy was "needled" within the first 10 minutes of being there...The first part of the day was telling us what medicines he will be on and what it will do to him as far as side effects. Then what medicines he will take to combat those side effects, and what those medicines will do to him... that went over well. At this point he got up and walked away.. We thought he was going to make a break for it, and im sure he debated it, but he came back. Around 11am, 4 Iv's into it, they were just wrapping up giving him the medicines to ward off "some" of the side effects and allergic reactions he could have. Luckily by the time Tom Zilly got there to relieve me, some of the medicine they gave him to relax started to take effect. He was much more pleasant for the nurses. I dont know too much more since Zilly took the last half of the day, but I will report more as I find out. He is home now sleeping. He got out of the hospital around 4pm. He is tired and very "out of it". But he did ask me to bring him some wine :)

may 19

Not too much to report. Today Billy went for a PET scan. They put some chemical into him that makes him radioactive... nice.. He isn't allowed to "touch" anyone for 12 hours..It made him tired, and of course really hungry since he has been fasting. He is going Next Tuesday to get the "port" put in. This is some kind of device that they sew under your skin and has a catheter that goes into your veins. This will make the chemo enter him a little easier. (not a needle fan)
Wednesday will be the first round of chemo.. They say normally it takes around 4 hours, but the first one should be longer. They have to test a few of the drugs they put into him for allergic reactions before they can give him the full dose. Myself and Zilly will be tag teaming this appointment.

Sloan Kettering Update

Yesterday, Billy and his brother Micheal went to Sloan Kettering. Believe it or not, Billy was actually on time for his appointment, but had to wait in the lobby for 2 hours before his name was called... as you probably have guessed, this did not go over well. Fortunately, in the end it was worth it. The doctor at Sloan was very pleased with what Dr. Bedner at Hunterdon had said and recommended. Apparently the good doctors at Hunterdon are very up to speed with the latest treatment plans. Sloan recommended Billy to stay with Hunterdon for his Chemo treatments, but to come to Sloan in NYC for his radiation therapy. Radiation is very risky, especially when it is dealing so closely to the heart. It is better to go to the place that does it more often, and has the latest and greatest methods. We agree.
Now, we were worried that because we found the new lump Billy would be moved to stage 3.. Normally this would be so, however, because the lump is still "above" the diaphragm, he still remains stage 2. They also said that the form of Hodgkin's he has is one of the more aggressive diseases. But, believe it or not, this is good news. He said that the more aggressive diseases do better with chemo... a bit confusing, I agree.
So, this is the plan. Today Billy went to Hunterdon for a Pulmonary test. This is to test his lungs. He has to go blow into a tube. He does not have to have a bone marrow test, but he does have to have a PET scan. That is going to be done on Monday. Then on Wednesday of next week, he will go in for his first 4 hours of chemo. Chemo is scheduled to be 8 treatments. It is going to be administered once every 2 weeks, then he will be reevaluated. If all is well, then he will go to NYC for Radiation. That will be 5 days a week for 2 weeks.

the latest

Tomorrow Billy travels to Sloan Kettering with his brother Micheal. Having a "fresh" set of ears, and someone with more Knowledge of Nancy's illness should be of great benefit. He has an appointment for a pulmonary test (breathe in tube = test lungs) on Wednesday. Then the 21st is the first day of chemo. We tried today to have the chemo moved to this week. Unfortunately they need to wait for all of these test results before they can start the treatments. The need to move up was brought on by concerns from this weekend. He had troubling symptoms that weren't present before, along with an additional lump found on the other side of his body... Generally 1 lump is stage 1, more than one lump on the same side of the body is stage 2, lumps on both sides of the body moves you to stage 3... along with the additional pain and other symptoms, we would rather go sooner than later... ill post more on Wednesday after we hear what SK says..
thanks
w

log in name and password

We have found that many of you have a hard time leaving comments on the website. I have created a name and password you can use, you just need to make sure you sign your name after you post a comment, or all of the comments will be from me. Also, if you could leave your email addresses, Billy can write you back directly..
thanks
sign in name wendyrut@aol.com
password billyscott

this will save you all from having to register to leave a message.
thanks!

dr.'s update

We spent 5 hours today with the Oncologists at Hunterdon Medical Cancer Center. They were really good. They were very personalized, hands on and "to the point". We were only there for a consultation, but we were able to meet with both the oncologist, and the radiation oncologist. He went through another battery of tests, and have more scheduled for the days to come. It was to say the least, very mentally draining with a lot of information over load. Should he decide to stay at Hunterdon, his first Chemo treatment will be on the 21st. Next Tuesday we have a meeting with Sloan Kettering to see what path they would recommend, and to get a second opinion on his "slides".
Thoughts of Billy's sister Nancy weigh heavily on his mind and add a lot to his concern. But, his doctors and I are confident. They are projecting he will be taking chemo once every 2 weeks, for approximately 12 weeks. Then it is followed with 2 weeks of radiation every day. Then he is evaluated again...
as always, thank you for your prayers and support

treatment update

We have been in contact with Sloan Kettering. Unfortunately, due to stupid insurance regulations, Horizon Blue Cross of NJ isn't accepted at the NJ facility, only the hospital in New York. We have been assigned a doctor and are in the system awaiting contact for our initial consultation for treatment... Its been 2 days, so I will be calling later today to force an appointment...
On a side note, yesterday I contacted Hunterdon Medical Cancer center. So far this is where we have had everything taken care of. They are affiliated with FOX CHASE. (Sloan is ranked number 2 in the country, number 1 in the east... Fox Chase is number 11 in the country and number 5 in the east....) I was able to get a consultation with an oncologist scheduled for tomorrow, Thursday.. This will give us an idea of the course of treatment they suggest. We already know there wont be more surgeries, just chemo and radiation...

yes, we will still get a consultation with Sloan.... if I can ever get him an appointment...
thank you all for your help and well wishes so far, his spirits have been down of late...

I know everyone wants to offer support and just doesn't know how.. I did order 100 Live strong bracelets, in the color gray. They say "Scott 1" on them, as you know this is one of his team colors, and always his shirt number... they should be in tomorrow and I will get them out to you as soon as possible. I know this doesn't equal to "helping" but since there isn't anything anyone can do yet, at least we can show a unified support for him.
thanks again,
Wendy

My thoughts on cancer

I felt that I needed to shed some light on things that have happened so quickly. It's Sunday night and I realize that I am sick....and I'm angry about that. You see this is my life and I am blessed to be surrounded by so many wonderful and good people. I've had friendships now that have lasted 40 years...and I'm only 47 so how lucky am I? The relationships I have are the foundation of my existance....translation meaning the people in my small world are everything to me and life means very little without all of you. That comes from my heart. Cancer now becomes a large part of my world and will dominate my routine and test my courage. It enters my world without invitation and thats unacceptable to me. I choose, It's the fundamental of my beliefs and now thats gone...maybe forever....and thats not acceptable for me.
So I have Hodgkins disease as so many others before me have had. Cancer doesn't scare me nor does the fight against the disease scare me. What does scare me is the thought of not being there for any of you that may need me spanning rom my family to my friends, to my ball teams to my dogs...not being able to work for my days pay.. being week....inept...useless...feeble...weak...these are my greatest fears. I'm a fighter and I have never had self doubt but cancer changes that for me...I'm fighting an opponent I can't see. You all should know I woke up today with the thought that I won't do the treatments..chemo and radiation, they're not for me. I watched my sister Nancy fight this disease for 2 years and fail...my father as well. But then I remember that you all count on me in some small way and you need me to be around as long as I can be...but please understand I don't want to be sickly, weak and bedridden so a compromise may be in order...so I will fight this fight for all of you..and we'll just see.. Please know that I am not scared of what lies ahead for me. I have had the pleasure of kindness, love and understanding from all of you and I take that with me everyday and I am greatful and do not take it for granted. I've done my best to return your love and trust in my own way. So tomorrow my fight begins and I will fight like hell...for all of you. Should I fail please know that I love you all..my family, friends and teamates who are like my brothers and mean so much to me....i've always" left it all out on the field" and this fight will be no different for me. I love you all and I'm greatful..Thankyou.

medical update

Hodgkins Lymphoma Stage 2

The rest of his body was clear, it is only in his neck and around the heart. It was recommended that we being Chemo and Radiation immediately. It does have one of the better success rates. I will write more, when I know more..
thanks
w

Not too much to report. Billy was going in today for his cat scan. It is a 20 minute procedure and he got to drink a really yummy shake that tasted like chalk. He tried to feed it to the dogs, but they wanted nothing to do with it. He has been doing fine. He is very sore from Mondays surgery and learned really quick what his limitations are. (not that he listened). He did make it to watch his little league team play ball, but couldn't stay long. The other dad's sent him home. He has been pretty tired lately, but still has his usual "cheery disposition". He does read his messages, so thanks for all your well wishes.