Today didn’t start out that good. I was supposed to be at Johns Hopkins at 8:20 to get a CT Scan then my third infusion. Daughter Jessica discovered that someone had stolen her Teacher’s bag from the back seat of her car the night before. It wasn’t very valuable, but it had her kid’s assignment for her to grade. She called the Police to report it and was late to my house. On the way to Johns Hopkins on 395, we were almost involved in an accident. I confirmed that the ABS is still functioning on the Buick! We finally made it to JH about an hour late.
While we were waiting to get the CT Scan, we got into a conversation with a family whose husband and father had just found out today he had Stage IV Renal Cell Cancer. He was getting his initial CT Scan. They ask me to speak to him when he came out, because he was not taking it well at all. I was able to talk to him for about 20 minutes, letting him know that it wasn’t the end of the world and he was in good hands there at JH. I think that the family benefited as much as he did with my little speech.
We went to lunch, then came back to get the results of the Scan and wait for my medicine to be prepared. Monica had told me not to expect too much as they haven’t gotten much change it the first 6 weeks. She said there may be some small growth, but that was a normal reaction. We had been back from lunch and waiting for just a few minutes when Monica came out to share the results with us. She sat down between Jess and I and told me that, while there was some growth, especially in the lung nodules, the tumor in my Adrenal Gland had shrunk be over 50%. The other tumors were mostly stable, with a couple that had gotten smaller as well. While the nodules in the lungs had gotten slightly larger, they were “blooming” from the injection and should show shrinkage the next Scan. You know it’s a good report when the nurse gets emotional when she’s giving you the news. I can tell you this, if you have to be on a Clinical Trial, Nurse Monica is who you want guiding you through it!
She went on to say that 3 other people had similar results on the first CT Scan, and one patient, who had started the trial in a wheelchair and very frail, showed no cancer remaining at all at the 18th week! I’m not saying it will be gone in the next 12 weeks, but I can see the light at the end of the tunnel!
I got my 3d injection with no problems or side effects at all. I did meet 2 other of Monica’s patients getting their transfusions as well. Someone’s bringing the cards for the next time.
To top of a perfect day, Jessica called me when she got home to let me know that the police had found her bag with all it’s contents and had returned it to Matt while she was with me.
It doesn’t get any better than this!
It’s just past Christmas Eve and the house is silent. Linda’s asleep, Jason in the basement probably snoozing in front of his 51″ bigscreen. I haven’t heard a peep from him since about 7. I just finished watching the “Delta Force” with Chuck Norris. It’s amazing that the military back in the 80′s let the troops wear their hair longer than the Beatles! Except for Lee Marvin, his hair was short. The best part about it was it was on a Spanish channel. Most of the commercials were in Spanish and all the female announcers looked like Selma Hayek. You couldn’t understand them, but you didn’t care.
Linda commented that it didn’t seem like Christmas this year. I’ve been thinking about that and agree with her. Jessica was the big Christmas Enthusiast, but she’s in her own home now. Jason just goes off and does his own thing as usual, so Linda and I watched a movie together then she went to bed. She doesn’t have to stay up till 1 for the kids to be asleep so we can bring the presents out. We no longer get up at the crack of dawn to open presents. Jess and Matt will be up here sometime after 9 tomorrow, that early only because they are visiting Matt’s relatives at 1. I hope Jason gets up in time for everyone to open their presents together.
It appears to me that there are Christmas “cycles” just as there are weather “cycles”. It revolves around the children. We are a few years away from the Grandchild “cycle”, so we’ll just have to bide our time until then. No rush, Jess, Matt, and Jason! We plan on being around for at least another “cycle”.
I had my second “infusion” this past Wednesday. Debbie R was kind enough to go with me. It all went well except for the backup at the pharmacy adding a couple hours to the visit. I took the meds without a shot of Benadryl and I came through with flying colors. No rashes, itches, happy feet, or anything. I just napped for the first 30 minutes, then talked with Nurse Monica and Debbie for the remainder. I was even able to drive Debbie to her doctor’s appointment since we were so late. I didn’t have the big energy surge I had the last time, in fact had no side effects at all. I will get a CT Scan the next time I go, and I believe that they will see some positive responses.
I hear someone on the roof, so I better sign off. I hope this finds you having a great Holiday season.
I’m just finishing up a really good week.
On Monday, I drove Gregg O to GBMC to check his annual checkup and Xray. The Docs say he is doing great, which is a good thing.
On Tuesday, I got to Spunk fitness, ran some errands, and washed clothes.
On Wednesday I went back up to Johns Hopkins for another blood draw. Nurse Monica took control and got me through the tests in record time. She is my guardian angel up there. She also shared with me that the infusion of energy I experienced had been reported by other trial members. It would be amazing if the only side effect is like drinking a couple of Red Bulls!
Thursday was more Honey-do days, with the towel washing this time and more errands. Thursday evening around 11:00 pm I got a call from one of my oldest friends, Gary B. He and Carol had moved to Pa to be near his mother several years ago, so we haven’t seen each other much. He told me that his son Chris had been in an accident and was en route to Howard County General Hospital. Chris had called his father right after it happened and Gary could tell he was not normal.
I rushed over the the Emergency Room and found him sitting in a chair holding an Ice Pack to his head. His shoulder was sore, but Xrays confirmed no broken bones or concussions. I called Gary to let him know that Chris was shaken up but OK.
He was sitting at a light in Elkridge after leaving the Community College when he was struck in the rear. I took home with me after stopping for some pain medicine.
The next morning, after he reported the accident, we went to see his car. It was hit really hard in the rear and was totaled for sure. It’s amazing he didn’t get hurt worse. We left there and arranged for a rental car. His Dad showed up a few minutes later and we had lunch. They left the house about 3:00 to pick up the rental and get Chris to his house in Baltimore. I then took a nice extended nap until Linda came home. I never did make it to Spunk.
Saturday was a lazy day. Linda and I vegged out and watched TV. Saw a couple good movies, but I never got outside the door.
This morning, Linda and Jessica did some Christmas shopping. I ran to Safeway and Jason went out and got us a great Christmas Tree. Linda and Jess will be trimming it on Tuesday, so it will still be a family affair, just different times.
We went this evening to our friend’s Jimmy and LouAnne’s for a dinner. All the usual suspects were there and it was an outstanding time. The food, as always, was great. The theme this evening was a wine tasting contest. Everyone was to bring a bottle of wine, disguise it as their own, and then choose a winner. I had originally thought about bringing some Boone’s Farm, but Linda suggested a Pinot Gris wine. I went to the wine store near Safeway and asked the attendant for advice. I should have known better. If a customer came into a used car lot and asked for the salesman to select a car for them, the salesman would take them immediately to the oldest vehicle on the lot, because there was usually a big bonus attached to the sale. My “Salesman” immediately suggested a bottle of XXXXX Pinot Gris ( I am omitting the name of the wine to avoid a lawsuit). The fact that it was the last one left and had an inch of dust on it should have been a warning, but nonetheless when he told me that it was the most popular Pinot Gris in his store and the price was right, I was hooked.
You have probably figured out the result. I quote a line from a wine professional :Innocuous and uninteresting are two words I’ve heard so often I half expect to find them on a back label: “An innocuous, uninteresting wine. Pair with pasta, chicken and fish.” We finished 10th and last. I think if someone had brought the Boone’s Farm we would have finished 11th.
So this week was a very good week. Anytime you can do a couple of good deeds it’s a plus.
My next injection will be on the 21st. Debbie R is going to join me. I’m actually looking forward to that little burst of energy.
I thank you for reading about my little adventures. Remember my friends, if you need me. I’ll be there.
It’s Sunday night, 4 days into the new trial. I must tell you that I have felt great over the last few days. When I woke up Thursday, the Benadryl had finally worn off. I had more energy than I have had in a couple of years. Makes sense, the pill I used to take was supposed to make me need more sleep, and it definitely did. I’ve been working hard on our farm “project” and after making a ton of phone calls and emails, I ran some errands. No fatigue, got a lot done.
On Friday, I got up, went to Spunk, the fitness center I joined. I did 30 minutes on the treadmill and did the circuit in the weight room. I went home, took a shower then headed back up to Johns Hopkins so they could draw some blood for the trial. I was there less that 15 minutes, which has to be a new record. I told the tech that I was really feeling good and she said that none of the other patients that were on the trial had indicated any problem with side effects.
On Saturday, Linda and I took her car to Academy for an oil change. We went to lunch, did a little shopping, and made 3 trips to Blockbuster to get movies.
Today was veggie day. I sat in front of the TV, watched the Redskins lose, Ravens win, and some other mindless shows.
The thing about today, I had the energy to go out it I wanted to.
Tomorrow it’s a role reversal, as I’m taking my friend Gregg O to GBMC in the morning for his annual cancer test. I’m glad to be on the giving end this time.
All in all, the Trial is going swimmingly. No side effects, nausea, rashes, runs, or hair turning red. I go back Wednesday for another Blood Draw, then get another infusion on the 21st.
I’ll keep you up to date.
It has been a long day. I woke up this morning at 5:30 because we had to be at Johns Hopkins by 7:30. After a Pit Stop at Mickie D;s, we hit the road and got there just about on time. We were on the VIP treatment program so they immediately started sucking my blood. They had to put in an IV in each arm as they would be drawing blood and intravenously giving me the trial drug and benadryl and can’t do both through the same IV. They also had to install adhesive circles on my chest and arms to give me an EKG. I didn’t have to give a urine specimen. I wish they had told me before as I was holding it all morning so I could give them a good sample. Looks like the “peeing for pills” program will not apply to this Trial.
The blood test came back with everything looking good except my glucose was 215. I blamed it on the Mickie D;s breakfast!
I sat down in a recliner in their Chemotherapy room. Linda sat in the chair beside me and immediately began to try and turn on the TV. Even with help from the nurses, it seems an impossible task. The nurses gave me benadryl to prevent the rashes and itching that the trial drug had shown to cause. I then started the drug about 11:00 am. It takes about an hour for the complete dosage to slide through the tube. Pretty soon my feet started auditioning for “happy feet”! I was rubbing them against each other and couldn’t stop moving them around. I was tingling through the rest of my body as well. It wasn’t that bad a sensation, but Linda insisted I tell the nurses. They conferred and decided it was the Benadryl that was causing it. I won’t be taking it the next time unless I really need it. All in all, it wasn’t hard at all. I didn’t get sick, lose any hair (yet) and it was over pretty quickly. Linda had finally got the TV turned on and had finally found a TV show she wanted to watch just as the session was over. She requested they give me another dose so she could watch the show, but thankfully, they refused. They sucked my blood and did another EKG when they were finished.
We then went to lunch (Nurse Monica gave us lunch passes, it’s a hell of a way to get a free lunch!) as we had two wait 2 hours for the last blood draw and EKG.
At 1:50 they drew the last blood and EKG. The roughest time of the day was when the nurse had to remove the adhesive circles that held the EKG sensors to my chest. I’m seriously thinking about shaving my chest before the next session (3 weeks). Maybe one of you can recommend a good hair removal waxer?
All in all, the day didn’t go bad. The next time I won’t have to spend the whole day there. I will go every three weeks. I have the next 2 sessions booked (Debbie and Jessica), so please let me know as soon as possible if you would like to attend!
It’s Friday night, Veteran’s Day, and everything is winding down. I’ve got a lot to talk about tonight, so let’s go.
This past Monday was my 2nd visit with my Cardiac Doctor, Dr Muse of Johns Hopkins. It was a good meeting, I’m doing OK it seems. I asked him about how soon I would be able to have an operation (on my knees, if they get worse). He told me that because I’m taking Plavix, any operation would be a much greater risk. Plavix is a blood thinner, and I must take it every day, without fail, so the platelets cannot stick to my stent. It would have to be a very very serious operation to take that risk. I guess the knee pain will be with me for a while. He gave me a prescription for a stronger Crestor and upped my Fish Oil to 9 pills a day. I’ve noticed that the cats hang around me more since I started taking that many pills.
When I got home, I got a call from Nurse Monica. She said that the new Trial was filling up faster and would close sooner than she thought and she asked me to return to fill out the consent forms that afternoon. I hopped on Seabiscuit and rode back up and signed up for the trial. It seems that it is going so well, they are finding candidates faster than they thought. I will go back on the 22d of November to do both the close out for the old trial and the baseline for the new one. My first injection is scheduled for the 30th. Debbie has volunteered to be my advocate once again. I do appreciate it.
When I went home, I stopped by CVS to pick up the new Crestor prescription. I never bothered to look at the meds when I picked them up, but when I went to take it, the name was different, some kind of statin. I assumed that it must have been generic version of Crestor, but Linda insisted I call and make sure. It turns out that the pharmacist had given me the wrong medicine completely. Dr Muse had written the chemical name of Crestor, but the pharmacist didn’t look close enough and gave me a completely wrong med. Thank goodness that Linda had that Jimmy Stewart in “It’s a Wonderful LIfe” moment, or I could have been in serious trouble. People, watch your meds.
I’ve been off the Xitinib for a little over a week now, and my life is returning to normal. I went out and bought Arm and Hammer toothpaste to replace the children’s Crest, and Cool Mint Mouthwash to replace the Bioteen. I approached that simple morning ritual with some trepidation to using the “grownup” stuff, but everything was fine, my mouth wasn’t on fire when I used them. Paul, you can bring over some of those Shrimp with the homemade sauce. I’m ready for you! While my knees are giving me fits, my feet no longer are an issue. I can walk in my bare feet on the tile floor without wincing! If you are used to something, it becomes the norm. It still feels odd to have no issues with the side effects, but I’m sure I’ll adjust.
Jason called me today and suggested we go out to dinner to celebrate Veterans Day as several restaurants were offering free food to Veterans. I went online to see what choices we had, and what a disappointment. While Applebee’s had several Entrees listed, Outback was giving Veteran’s a Bloomin Onion! If I had known this, I would have refused to go to Vietnam! Wow, 3 years of your life, 1 year in a Combat Zone, and you get a Bloomin Onion!
I sometimes forget that I am a “Veteran”. It’s been over 40 years ago! I don’t advertise it by wearing clothing or patches or join organizations. I don’t volunteer the information very often. I did my part a long time ago, am proud of it, and would do it again. Enough said.
Today is a day I will remember for a long time. I received a call from Nurse Monica. She let me know that the clinical trail for the new drug would be closing sooner than they had thought, and that if I waited until December I wouldn’t be able to get in. There was no assurance that I would qualify for the other studies that would include this drug and a combination of other drugs.
It was a no-brainer for me. I’ve been on this drug for over 2 years and, while it has arrested the growth up till now, looked as if it had run it’s course. I have taken my last dose of Xitinib and will be drug free for a month before I get the first intravenous injection on November 30th. I will be visiting every 3 weeks for those injections. The side effects are supposed to be less severe than the current drug. I am looking forward to that!
A lot has happened over the last couple of years. I have found that I have family and friends that are always there when you need them. I want you to know that that knowledge has helped me much more than you all may realize. I know that should anything happen to me, that Linda, Jason, and Jessica would get as much support as they would need from our friends and family.
There has been another realization. Since beginning this trial, while I have planned ahead, I really never looked much beyond a 6 month period of time. Linda and I have now been talking about her retirement. She is eligible to retire from the school system next year, 2012 and would receive about $650 in retirement. If she waits until 2014, she would then receive $850 and be eligible for SS! Some of you know that we are working on a lease for our family farm in WV of which I have a minute share. It looks like it is coming to fruition, and will provide some additional income in the next couple of years.
A long time ago, Steve G and I made plans to buy an RV and hit the road when we retired. I thought it was a lost dream over the last few rough years, but there is light at the end of the tunnel.
Don’t be surprised if an RV stops in front of you house in the next couple of years and 2 old guys jump out. I’m just saying.
I went to Johns Hopkins yesterday for my CT Scan. I got to ride Seabiscuit to the appointment, probably for the last time until spring. It took a little longer as to get the CT done as they were very busy, but I did meet another author. I was reading my Nook while waiting for my turn and she told me she was an author and had been for 30 years. I don’t think she’s had a best seller yet, as the library doesn’t have one book by her. Amazon is showing her book online, but doesn’t show another book. I guess I’ll spend the 4.79 and find out. I’ll let you know if it’s any good. Her name is Martha Fawcett and her book is Alone, Book One of the Janiforma Trilogy.
The CT Scan showed a little growth in a couple of areas. Dr Carducci suggested we do another scan in 8 weeks instead of 12 and decide if we stop this trial and start another. They have one up and running on MDX 15 that shows some good promise. If it doesn’t work, I can go back to the Xitinib that I’m on now. The blood work is coming back great. My glucose was 120 and everything else was normal or a tick above.
I joined Spunk Fitness to keep up my exercise regiment. I lost about 10 lbs and 3 inches off my waist, and would like to get down another 15 or 20. I attended a “free session” to help get me started. It turns out it was an opportunity for them to pitch a personal trainer for $60 a session for me. I can’t imagine how hard it would be to keep the women off of me if I had abs instead of pouches, so I passed.
My knees are acting up again. I walk like an old man in the morning when I get up. If it gets any worse, I’m going to keep a bottle next to the bed so I don’t have to walk to the bathroom at night!
I’m going to see the knee doc again soon. I’ll get to listen to another session, this one about bionic knees! I’ll let you know how it goes.
It’s Sunday night, the house is quite, and the cats are in hiding. Jason volunteered to watch a friend’s puppy for a few days. It’s about 8 weeks old and all legs and feet. We have 3 more days, and I’m counting the minutes before it goes back to it’s owner. The cats are traumatized! Our female Sweetie wouldn’t come out of my office, even for food. I had to take the food to her. Cinder, Jason’s tomcat will stare at the pup and dare it to come close so he can swat it. The pup wants to play, but the cats just want this interloper gone! Our back porch is like a prison, every opening is locked and the doggy door is covered with a trash can and chair to prevent the dog from escaping. The pup is also not house broken. I took it out today and we walked a round for a while, then came back in and she immediately crapped on the living room carpet. I guess the grass tickles it’s butt or something. Linda is apparently allergic to dogs as whenever shes pets the dog, she then immediately starts sneezing and loses her voice. I’m thinking about getting a rabbit’s foot and gluing some dog hair to it for some quite time when I need it.
My cardiac rehab ends this week. I am going to miss it as I feel great when I do it. I plan on joining the same spa as Linda goes to. I will be a test of my wherewithal. I hope I pass.
I did something nice for someone earlier this week. It turned out to be bad for someone else. I guess I just didn’t think it through before I did it. Now I feel bad about doing something good. Specifics would just be more hurtful, so that’s as far as I will go.
I get my next CT scan at the end of the month. It’s getting so routine that I’ll probably go alone and get it done. I’ve been on the trial longer than anyone in the country, and they say it may be approved by the FDA by the end of the year. Hey, maybe I’ve helped out a little.
I’m sitting here on Wednesday evening, listening to the thunder outside. The rain has followed us all the way from West Virginia and hasn’t stopped. It did wait until we had just left the reunion, but we haven’t seen the sun since Saturday afternoon! The pool is overflowing, the gutters have collapsed again, and our neighbor’s basement is flooded as well. Irene was a wuss compared to this. It’s been raining so long, I’m going to have to put my training wheels back on Seabiscuit.
Our family reunion was this past weekend in Big Moses, our farm in West Virginia. Once again, a whole bunch of relatives showed up, including some cousins we hadn’t seen in years. The food was abundant and tasty, and I couldn’t find anything to eat that was in my Cardiac Diet Book. A man has to eat, however, especially when the food is that good. I have one regret, I didn’t make the Morning After Breakfast. I’m sure Jason had my share of the Tomato Gravy over home made biscuit and probably the Sausage Gravy as well.
As I said before, when your in Big Moses, especially if you spent a lot of time growing up there, you feel the history of the place. Lawrence Alfred took me to the old Underwood homestead. You need an ATV or old 4WD Pickup to get back to it. A new pickup will make it, but it will be old by the time you make it back to the road. He is building a cabin to use when they come down. It’s not much more than a shell, but it will be special when it’s done, from the stove in the middle of the great room, to the solar paneled lights that provide light through the nite. The original house is there, with the water well and pump just outside the back door, to the 2 holer that’s a little further away, and hopefully downwind. It’s deteriorating now, but still takes a great picture.
I got to spend some time with my mother’s twin sister, Monna. She’s the last one of that generation and was the “Queen Bee” as she has always been. The White Elephant sale went pretty well, but we have lost a couple of the principle organizers of that event over the past few years, so it wasn’t what it used to be. I’m supposedly the “Head Auctioneer”, but Michigan Linda (AKA as Linda #1, my wife being Linda #2) was the real mover and shaker to get the bid action going. Every year we have a raffle of a Auntie Doll. This year it was Aunt Nellie, who was Linda’ #1 and Marcia’s mother. Marcia has made these dolls for many years and sends them down for the Reunion. They look like dolls out of the 1800′s as Marcia is a master craftsman of country accents. She has been doing it for years, and is an Artist. We still talk about when she made dolls of Monna and Wonna (my mother). Much to Monna’s consternation, Marcia made the Monna doll black and the Wonna doll white. It was a metaphoric move, I believe as Monna was 5′ 8″ tall with red hair and my mother was 5′ even with jet black hair like her mother. Monna even called Linda to complain that my mother should have been the “black” doll as she always had that “tacky” black hair.
It’s been 2 years since I started the Clinical Trial as Johns Hopkins. I never believed back then that I would be attending this reunion. I’ve had more support over that time that could have been imagined. I just want you to know that I appreciate it EVERY DAY.
