I'll keep the blog short, not too much to say. I'm getting admitted to the ICU on Monday, pending a hurricane doesn't get in the way. They tell me if it hits Houston I'll have to wait a week to get it, the hospital locks up during storms.
I dragged Mom to another movie...I'm sure she wishes I hadn't, Stepbrothers. To be honest, I could have done without it myself. It had some funny parts but over all was too silly for my taste. Afterwards we went to a Marble Slab Creamery for some excellent ice cream, it was nice to get out of the house for a bit.
They removed most of my stitches today, I say most because there were a couple scabbed over they couldn't get to so decided to wait for it the heal up some more.
Other than that, I'm just looking forward to enjoying my weekend with family and not in the ICU. Right now we're waiting for Debby's mom and sister to arrive and hang out with us for the next few days. What this means is I'll be getting out of the house even more.
Thanks for the support,
Jason
Friday, August 29, 2008
Thursday, August 28, 2008
Deep in the heart of Texas
Sorry we never posted a blog last night, but we have a very good excuse. We were all food comatose from copious amounts of rich, gooey, chocolaty, delicious dessert. Franz Marie, my former boss from back in the day, and still a good friend, was in Houston on business. She stopped by in the evening for a visit and brought us what is called Capirotada from the restaurant Pappasito's Cantina (which is excellent and highly recommended if in the area). Capirotada is a warm chocolate bread pudding topped with custard and served with vanilla ice cream, sticks of chocolate and a chocolate covered strawberry. The dessert was huge and sinfully rich! We all ate so much because it was just too good to stop. So we were a little immobile last night. We also had a good time seeing Franz's latest pictures of her 11 year old son Tosh and 2 year old daughter Marley. We were hoping to see pictures of Casey, which was Marjorie and Terry's old Senegal parrot which Franz and Lippy adopted a few years back. She didn't have any pictures on her phone but said she would email us some when she gets a chance. We also got to hear about some of her experiences working with famous Oncologists at MD Anderson. It was a really great visit.
It was also Marjorie and Terry's anniversary yesterday. Unfortunately, Marjorie is here...deep in the heart of Texas...while Terry is in California. This was a bummer. So Jason and I were stand-ins for Terry when we went out to dinner. We talked about him a lot so it was almost like he was at the table with us. We probably could have speaker phoned him in, but I don't know if the restaurant would have appreciated that :-)
Terry, Jason and I got Marjorie the new iPhone for their anniversary. It was a bit of a quest that took Marjorie and I all over Houston, but we were finally successful at an AT&T store. After about 10 phone calls, we found a store that had the phone in stock and we were able to pick it up yesterday afternoon. She has been playing with it ever since. She is getting very tech savvy between her new Garmin GPS and the 3G iPhone.
Jason has been doing a lot better since taking Naproxen and he has finally been able to enjoy his second week of recovery. Better yet, we got news today that he wouldn't have to be admitted to the ICU until Monday. He has appointments most of the day tomorrow, but they aren't going to start his second treatment until next week. We were so happy to hear this because my mom and sister are coming to visit this weekend and we thought they would have to spend most of their visit at the hospital. Now we might be able to explore Houston a bit. We have hardly been out of the townhouse but now that Jason is feeling better, we can hopefully check out the city. Hopefully we will have some more scenic pictures for the blog after this weekend. Thanks for sending the comments and we miss everyone back home!
Tuesday, August 26, 2008
Made it out of the house
Looks like the long day at the hospital yesterday payed off a little. The doctor gave me a new prescription, an anti-inflammatory, something they wouldn't give me before while they were checking for infection. The new drug seems to be working, I'm not walking normal yet and stairs are a bit difficult, but it's only the first day on the medicine and I was able to make it out to the movies.
Tropic Thunder was the picture Debby and I dragged my Mom to this time. Needless to say, the two of us found it to be hilarious and overall a good movie....Mom not so much. One cast member surprised all of us. It's not hard for me to dislike Tom Cruise on many different levels, but his role as a deranged, eccentric, out of control, over-weight, and hairy movie producer made it hard not to like him, he did a great job. We all thought he did it to get liked by the public again, but who knows.
Other than the movie that's pretty much the extent of my day. Still dealing with some pain, trying to help out when I can, but mostly spending my time planted on the couch, in my new PJ's and slippers, watching TV or playing the PSP or 360.
Tropic Thunder was the picture Debby and I dragged my Mom to this time. Needless to say, the two of us found it to be hilarious and overall a good movie....Mom not so much. One cast member surprised all of us. It's not hard for me to dislike Tom Cruise on many different levels, but his role as a deranged, eccentric, out of control, over-weight, and hairy movie producer made it hard not to like him, he did a great job. We all thought he did it to get liked by the public again, but who knows.
Other than the movie that's pretty much the extent of my day. Still dealing with some pain, trying to help out when I can, but mostly spending my time planted on the couch, in my new PJ's and slippers, watching TV or playing the PSP or 360.
Monday, August 25, 2008
So much for Jason's recovery week -
We thank you for all your tips and suggestions on Jason’s problem with his legs. We tried everything. This morning he was worse and could hardly walk. Debby was able to get him in today to see Dr. Kim. But he went everywhere by wheelchair. He has lost quite a bit of weight – about 8 pounds. On a pain scale of 1-10, 10 being the worst, he said it was around 8-9. They took x-rays of his lungs because he is still feeling some congestion. And he was sent for more blood tests – the doctor said there could be an immune response causing inflammation or an infection. While on interleukin 2 he couldn’t take any Tylenol, ibuprofen, or aspirin until they make sure his kidney function was back to normal. His strongest pain medication didn’t touch the pain in his legs. The doctor said he could take one naproxen tonight, and if the blood tests come back normal, he could take more tomorrow. With his regular pain killer and that one naproxen, his legs are feeling a little better tonight. We are hoping an anti-inflammatory is all it takes to make his calf pain go away, but we’re glad they’re doing more tests to rule out any more serious complications.
We watched a movie tonight that was supposed to be a romantic comedy and turned out to be a crazy animal rights movie – Year of the Dog. And Jason didn’t even pick it out and definitely didn’t want to watch it. Hopefully, he’ll be up to going to the video store the next time!
He has been playing his PSP a lot and enjoying all his new games. And yes, Marissa, we got the bracelets and we’re all wearing them. Thanks so much!
Mom
We watched a movie tonight that was supposed to be a romantic comedy and turned out to be a crazy animal rights movie – Year of the Dog. And Jason didn’t even pick it out and definitely didn’t want to watch it. Hopefully, he’ll be up to going to the video store the next time!
He has been playing his PSP a lot and enjoying all his new games. And yes, Marissa, we got the bracelets and we’re all wearing them. Thanks so much!
Mom
Saturday, August 23, 2008
Bad Obama
Last night was not a good night. Jason woke up at 3 am because he is still having really sharp calf pain in his left leg. He also had some indigestion, so I suggested we sit up and watch some late night TV until he felt better. I turn on the TV and what do I see...Obama picked Joe Biden for VP...grrrr! This did not make our night go any better. Oh well, if I know the Clintons, they will not give up and Hillary will run again in the future.
Jason was pretty worn out this morning because of his devastation over Hillary (just kidding), his lack of sleep. So Marjorie and I left him home to nap while we journeyed to Wal-mart to get some much needed supplies for the house. We bought Jason a scale and he is now back to his normal weight. He still looks like he has a bit of water weight so we think he might have lost a bit of muscle over the past 2 weeks.
So Jason is overall feeling pretty ok except for this intense calf pain. I have tried everything I can think of to lessen the pain and nothing helps. His doctor prescribed two 5 mg pills of oxycodone every 6 hours, you can't get a much stronger pain medicine without going to morphine. He said the oxycodone doesn't even touch the pain. He isn't allowed to take any aspirin, NSAID, or acetominophen. I tried rubbing extra strength arthritis cream on his calf. Didn't work. I tried Tiger Balm. Didn't work. I got him a heat pad and we tried ice packs and neither helped. We tried short walks and gentle stretches...no results. The pain seems to keep getting worse. He can barely put pressure on it and has to hobble along. I even took him to an acupuncturist this afternoon and that didn't help at all.
We are going to call his doctor on Monday. We already went to the emergency room and they ruled out a blood clot. So we have no idea what is causing this or how to make it better. If anyone has any ideas that I haven't thought of, I would love suggestions. He describes it has severe muscle pain in the back of his calf.
Tonight we are all taking it easy. We ordered a pizza and watched the last episode of Eureka, Season 2. It is a great show, quirky and humorous sci-fi. I recommend getting the DVD on Netflix. I hope everyone is doing well and we are missing you and San Diego. Especially Pita and the weather!
My dad made it safely back to Temecula and is now preparing to embark on a trip to Catalina island for some R&R after his road trip.
Jason was pretty worn out this morning because of his devastation over Hillary (just kidding), his lack of sleep. So Marjorie and I left him home to nap while we journeyed to Wal-mart to get some much needed supplies for the house. We bought Jason a scale and he is now back to his normal weight. He still looks like he has a bit of water weight so we think he might have lost a bit of muscle over the past 2 weeks.
So Jason is overall feeling pretty ok except for this intense calf pain. I have tried everything I can think of to lessen the pain and nothing helps. His doctor prescribed two 5 mg pills of oxycodone every 6 hours, you can't get a much stronger pain medicine without going to morphine. He said the oxycodone doesn't even touch the pain. He isn't allowed to take any aspirin, NSAID, or acetominophen. I tried rubbing extra strength arthritis cream on his calf. Didn't work. I tried Tiger Balm. Didn't work. I got him a heat pad and we tried ice packs and neither helped. We tried short walks and gentle stretches...no results. The pain seems to keep getting worse. He can barely put pressure on it and has to hobble along. I even took him to an acupuncturist this afternoon and that didn't help at all.
We are going to call his doctor on Monday. We already went to the emergency room and they ruled out a blood clot. So we have no idea what is causing this or how to make it better. If anyone has any ideas that I haven't thought of, I would love suggestions. He describes it has severe muscle pain in the back of his calf.
Tonight we are all taking it easy. We ordered a pizza and watched the last episode of Eureka, Season 2. It is a great show, quirky and humorous sci-fi. I recommend getting the DVD on Netflix. I hope everyone is doing well and we are missing you and San Diego. Especially Pita and the weather!
My dad made it safely back to Temecula and is now preparing to embark on a trip to Catalina island for some R&R after his road trip.
Friday, August 22, 2008
Better to be safe
Yesterday while talking to my nurse we mentioned a couple symptoms, one being a pain in my arm that passed after a day only to be followed by a severe pain along the back of my calf that is still there. She said that wasn't normal and to go to the emergency room, thinking it might be a possible blood clot. The Emergency room was packed, with people standing because there weren't any chairs left and beds in the hall. After talking with another patient that's been coming there for years, she said it was the worst she had ever seen it......lucky me I thought.
With some help, we were lucky to get out of there after only 3 hours or so, I don't think the other patients were going to be so fortunate. I walked out without having a blood clot, just some worrisome hours and a grumbling stomach.
Debby's Dad made the 1500 mile trip out here to drop off the car, only to fly back 24hr later. We couldn't thank him enough. While he was here he also managed to fix the downstairs toilet and put a couple lights up in the hallway. Thanks again Joe!
Other than that not a whole lot going on. I've been taking short walks everyday but with the leg pain its a sad limp at best. The girls were able to change the dressing on my central venous catheter all by themselves and did a great job.
Tomorrow we're thinking I might be well enough sneak out and see a movie, kinda having withdrawals.
With some help, we were lucky to get out of there after only 3 hours or so, I don't think the other patients were going to be so fortunate. I walked out without having a blood clot, just some worrisome hours and a grumbling stomach.
Debby's Dad made the 1500 mile trip out here to drop off the car, only to fly back 24hr later. We couldn't thank him enough. While he was here he also managed to fix the downstairs toilet and put a couple lights up in the hallway. Thanks again Joe!
Other than that not a whole lot going on. I've been taking short walks everyday but with the leg pain its a sad limp at best. The girls were able to change the dressing on my central venous catheter all by themselves and did a great job.
Tomorrow we're thinking I might be well enough sneak out and see a movie, kinda having withdrawals.
Wednesday, August 20, 2008
Texas Lizards - -
It's my turn tonight. It was a pretty quiet day. In fact, the highlight of our day was a little baby lizard. We've heard they have flying cockroaches in Texas which we haven't seen yet, but we had our first lizard come in when Debby opened the front door. I told Jason we needed a cat here! Debby and I moved the couch while Jason captured the lizard. Lucky for the lizard we don't have a cat - it "lived to fight another day".
Today was also another "Dracula" day - Jason "donates" blood at least once a week as long as he's here.
When Debby talked to her Dad this morning, he was in El Paso and was going to stop in San Antonio tonight. He should get here by noon tomorrow with Jason and Debby's car. We'll be glad to see him, knowing that he arrived safely! What a great Dad!
Except for continued all over joint pain and fatigue, Jason was doing a little better today. We thought he'd have a full 2 weeks to recover from the first treatment, but it looks like it will be closer to 1-1/2 weeks. He goes back to the hospital on Friday, 8/29/08, and will start his second round of treatment on Saturday.
The doctors want him to get some exercise every day, so we're hoping he'll feel good enough to start walking tomorrow. The Houston Zoo is close by, as well as several parks, but we'll start with a walk around the complex here.
Mom
Today was also another "Dracula" day - Jason "donates" blood at least once a week as long as he's here.
When Debby talked to her Dad this morning, he was in El Paso and was going to stop in San Antonio tonight. He should get here by noon tomorrow with Jason and Debby's car. We'll be glad to see him, knowing that he arrived safely! What a great Dad!
Except for continued all over joint pain and fatigue, Jason was doing a little better today. We thought he'd have a full 2 weeks to recover from the first treatment, but it looks like it will be closer to 1-1/2 weeks. He goes back to the hospital on Friday, 8/29/08, and will start his second round of treatment on Saturday.
The doctors want him to get some exercise every day, so we're hoping he'll feel good enough to start walking tomorrow. The Houston Zoo is close by, as well as several parks, but we'll start with a walk around the complex here.
Mom
Tuesday, August 19, 2008
"Beaten With a Baseball Bat"
I will be updating the blog today because Jason has been a little down in the dumps. He is not recuperating as quickly as he had hoped. To quote him "my arm feels like it was beaten with a baseball bat". He also has systemic joint pain and is having difficulty sleeping. The trouble is caused by a central venous catheter on one side of his body and a healing incision from his tumor removal on the other side of this body, so he can only sleep on his back. When he sleeps on his back, he still has congestion in his lungs, and it makes it worse. Did I mention that he also snores when he sleeps on his back (not fun for me) Patti, how do you cope? (hehe)
Marjorie and I have been pampering him as much as possible. I helped him get ready this morning and Marjorie made him breakfast. I went to the drugstore to get some supplies and Marjorie got us Chinese take-out for dinner. We make a pretty good team! We even managed to use a splitter and hook-up cable in one of the bedrooms, all by ourselves without any help from Jason. I am having to learn how to do all the things I usually rely on Jason for. It is not easy. He is definitely well appreciated right now.
The Chinese take-out restaurant Marjorie found was great! It had a lot of vegetarian options and is located right down the street. Jason is getting his appetite back and was able to eat a good portion of his dinner. But here is the best part...This is what his fortune cookie said..."Your troubles will cease and fortune will smile upon you." I couldn't have asked for a better fortune for him and I taped it too the refrigerator. Unfortunately, the fortune cookies were very stale. But I told Jason he had to eat it or the fortune wouldn't come true. Marjorie and Jason said they never heard that rule before and I said that was because I just made it up. We all ate our stale cookies just in case.
My dad is currently on a road trip to bring us our car. He is slated to make it to El Paso tonight and should be in Houston by noon on Thursday. We can't wait to see him. It was so nice of him to bring us the car and he even grabbed Jason's x-box and a few other things we wanted to have with us. We pray that his road trip goes smoothly.
I hope that Jason will be feeling like a new man tomorrow and hopefully he will be ready to post again. Until then, he sends everyone his love.
Marjorie and I have been pampering him as much as possible. I helped him get ready this morning and Marjorie made him breakfast. I went to the drugstore to get some supplies and Marjorie got us Chinese take-out for dinner. We make a pretty good team! We even managed to use a splitter and hook-up cable in one of the bedrooms, all by ourselves without any help from Jason. I am having to learn how to do all the things I usually rely on Jason for. It is not easy. He is definitely well appreciated right now.
The Chinese take-out restaurant Marjorie found was great! It had a lot of vegetarian options and is located right down the street. Jason is getting his appetite back and was able to eat a good portion of his dinner. But here is the best part...This is what his fortune cookie said..."Your troubles will cease and fortune will smile upon you." I couldn't have asked for a better fortune for him and I taped it too the refrigerator. Unfortunately, the fortune cookies were very stale. But I told Jason he had to eat it or the fortune wouldn't come true. Marjorie and Jason said they never heard that rule before and I said that was because I just made it up. We all ate our stale cookies just in case.
My dad is currently on a road trip to bring us our car. He is slated to make it to El Paso tonight and should be in Houston by noon on Thursday. We can't wait to see him. It was so nice of him to bring us the car and he even grabbed Jason's x-box and a few other things we wanted to have with us. We pray that his road trip goes smoothly.
I hope that Jason will be feeling like a new man tomorrow and hopefully he will be ready to post again. Until then, he sends everyone his love.
Monday, August 18, 2008
Longest Week Ever!
Well I made it through the first weeks dose of treatments, at least the portion that involves hospitalization, unfortunately the week felt like a month! The ICU in a cancer clinic is not a fun place to be. Nurses and doctors are constantly coming and going at all hours, not taking a break to let you sleep. The best is the 3:30 am wake up calls to draw blood (and they can't find your vein while they tell me I have good ones) or they wake me up just to weigh me. In retrospect, most of my neighbors in the ICU were in much worse shape than I, no matter how bad it came down on me, I had their fight to inspire to me, or put me in my place. Sadly, one of my neighbors in the ICU passed away. She had been fighting ovarian cancer for 3 months and my nurse was upset because she had been caring for her the whole time.
I again have to thank everyone who has commented, sent text, and have emailed. When I was unable to read them, Debby or my parents would read them aloud to me. It was always a bright spot in the day.
Now that I'm home (I use the word home loosely) I have about 18+ pounds of water weight to shed, an appetite to regain, energy to get back, and a wooly beard to shave. I'm going to keep this post short, its getting late and I'm not firing on all cylinders yet.
I again have to thank everyone who has commented, sent text, and have emailed. When I was unable to read them, Debby or my parents would read them aloud to me. It was always a bright spot in the day.
Now that I'm home (I use the word home loosely) I have about 18+ pounds of water weight to shed, an appetite to regain, energy to get back, and a wooly beard to shave. I'm going to keep this post short, its getting late and I'm not firing on all cylinders yet.
Sunday, August 17, 2008
1 More Day to Freedom
Sorry we didn't get the blog done yesterday - we were waiting most of the day to see if they were going to move him into a regular hospital room - they finally did at 6:30 last night.
Now that he's in a regular hospital room, we can all eat together. There's a number you can call any time of the day to order whatever you want off a very large menu. It's great! We especially like the warm bread pudding with vanilla sauce (Terry)!
Jason got the best night's sleep yet. Even with them having him do breathing exercises at midnight and a blood draw and weigh-in at 3:30 am, the new room is much quieter and more private.
Now all he has to do is continue getting rid of the water weight and walk laps 3-4 times a day to get out. We were hoping he'd get out today, but they said they'd release him tomorrow. Yeh! Yesterday he was having congestion in his lungs, but that seems to be clearing up today and he's feeling much better. He even let us subject him to watching African Queen. He wasn't impressed.
Tonight we'll be getting a TV delivery to the townhouse. We found a used 36" TV and DVD player which we plan on keeping for 3 months - and then will put back on sale on Craig's List. It will be great for Jason's gaming.
Tomorrow we are going to make Jason post - we're sure you'll all be anxious to hear directly from him.
Debby & Marjorie
Now that he's in a regular hospital room, we can all eat together. There's a number you can call any time of the day to order whatever you want off a very large menu. It's great! We especially like the warm bread pudding with vanilla sauce (Terry)!
Jason got the best night's sleep yet. Even with them having him do breathing exercises at midnight and a blood draw and weigh-in at 3:30 am, the new room is much quieter and more private.
Now all he has to do is continue getting rid of the water weight and walk laps 3-4 times a day to get out. We were hoping he'd get out today, but they said they'd release him tomorrow. Yeh! Yesterday he was having congestion in his lungs, but that seems to be clearing up today and he's feeling much better. He even let us subject him to watching African Queen. He wasn't impressed.
Tonight we'll be getting a TV delivery to the townhouse. We found a used 36" TV and DVD player which we plan on keeping for 3 months - and then will put back on sale on Craig's List. It will be great for Jason's gaming.
Tomorrow we are going to make Jason post - we're sure you'll all be anxious to hear directly from him.
Debby & Marjorie
Friday, August 15, 2008
"I Feel Like Poop"
We asked Jason to update the blog today and we would take dictation for him, and his response was "I feel like poop, leave me alone." So I, Marjorie, and Terry will be doing the update today.
One of the reasons Jason is not so chipper today, is that starting at 1 am this morning until 6 am, there was construction taking place and a drop hammer being used. Needless to say, we did not get much sleep! Jason requested earplugs for tonight just in case. The problem is they only gave us one pair. Is it wrong to steal from a cancer patient?
As we mentioned yesterday, Jason was having trouble with low blood pressure. He was on two separate medications all night to control it. Today, they were able to wean him off one, and eventually the other, and currently his blood pressure is back to baseline. The doctor came to visit, and thinks Jason should be able to be moved out of ICU tomorrow, and could be ready to go home this Sunday. The doctor has a pretty good sense of humor. He said most cancer patients come to ICU because they are extremely sick, but "IL2 patients come in healthy and we make them sick."
Marjorie and I successfully completed our nurses training course on care of the central venous catheter. We are now able to do cap changes, heparin flushes, and dressing changes. Yea for us!!! So we would now both like to be addressed as Nurse Jensen.
Terry will be departing for San Diego tomorrow and has an hour and a half layover in Las Vegas. He also has two free drink coupons for on the way there, so he might be in trouble when he gets to those slot machines. Lets hope he wins millions so he can fly everyone out here to visit.
That is the update for today. Jason is looking a lot better, but still feeling exhausted. We know he is improving because his sense of humor is back and so is his orneriness. Its amazing though, he has managed to gain 30 pounds of water weight over 4 days. What is even more amazing is that he should be able to loose it all in 2 days with the help of some diuretics, talk about a dieter's dream!
That's the update for today. We'll get back to you again tomorrow.
Nurse Jensen, Nurse Jensen, and Terry
One of the reasons Jason is not so chipper today, is that starting at 1 am this morning until 6 am, there was construction taking place and a drop hammer being used. Needless to say, we did not get much sleep! Jason requested earplugs for tonight just in case. The problem is they only gave us one pair. Is it wrong to steal from a cancer patient?
As we mentioned yesterday, Jason was having trouble with low blood pressure. He was on two separate medications all night to control it. Today, they were able to wean him off one, and eventually the other, and currently his blood pressure is back to baseline. The doctor came to visit, and thinks Jason should be able to be moved out of ICU tomorrow, and could be ready to go home this Sunday. The doctor has a pretty good sense of humor. He said most cancer patients come to ICU because they are extremely sick, but "IL2 patients come in healthy and we make them sick."
Marjorie and I successfully completed our nurses training course on care of the central venous catheter. We are now able to do cap changes, heparin flushes, and dressing changes. Yea for us!!! So we would now both like to be addressed as Nurse Jensen.
Terry will be departing for San Diego tomorrow and has an hour and a half layover in Las Vegas. He also has two free drink coupons for on the way there, so he might be in trouble when he gets to those slot machines. Lets hope he wins millions so he can fly everyone out here to visit.
That is the update for today. Jason is looking a lot better, but still feeling exhausted. We know he is improving because his sense of humor is back and so is his orneriness. Its amazing though, he has managed to gain 30 pounds of water weight over 4 days. What is even more amazing is that he should be able to loose it all in 2 days with the help of some diuretics, talk about a dieter's dream!
That's the update for today. We'll get back to you again tomorrow.
Nurse Jensen, Nurse Jensen, and Terry
Thursday, August 14, 2008
The Sixth Dose
Jason had a bit of a rough night yesterday so we were a little apprehensive about his next Interleukin dose. They decided to hold off on his 1 am dose and do the sixth dose this morning at 9 am. The first four hours went great. He felt fine and even managed to get down a bowl of cheerios. This gave Marjorie and I time to move all of our stuff from the hotel to the townhouse we are now occupying while Terry looked after Jason.
At about 1 pm this afternoon, things took a turn for the worse. It started with nausea, and then his blood pressure started to drop. It kept dropping...and dropping. The lowest it got was about 52 over 30 so we were all very worried. He also did not look well. He kept getting dizzy and lightheaded. He was clammy and covered in sweat. His nurse Rikki was wonderful. She kept on top of things all day. She put him on two separate blood pressure medications and right now he is at 100 over 52, which is a big improvement. He is also looking much better.
So after a discussion with his doctor, he thought that this should be Jason's last dose for his first course of Interleukin therapy. We were hoping to get to about 8 doses, but the doctor assured us that a patient is either a reponder or not, and the number of doses does not correlate with whether it will work or not. He thought that 6 was an adequate number of doses and that it wouldn't be worth it to push Jason any further at this point. So Jason will stay in the ICU until he can maintain his blood pressure without the medication. Then he will be moved to a regular hospital room for a day or two of recovery before he is allowed to come back with us to the townhouse. In two weeks we start this all over again.
I will continue to stay nights at the hospital with Jason while Terry and Marjorie have been running all kinds of errands to get the townhouse liveable and ready for Jason's arrival. They have also been spending as much time visiting Jason as the hospital allows and keeping everyone up to date with the blog.
There have been a lot of inquiries about what Jason might like or need. Everyone's comments have really meant a lot to him and we can't thank you enough for sending them. Everyone has been so encouraging! If anyone would like to send him a card, that would be great also. The address is finally posted in the blog. I also managed to force Jason to create a short Amazon wish list if anyone is interested. The link is attached in the blog below. Jason also likes gift certificates to Game Stop or Best Buy. He could also use a pair or two of comfy XL pajama bottoms. He usually wears his own T-shirts with them, so he doesn't need the pajama tops. Jason's buddies Steve and Jim are well connected at Playstation, so we will not be needing any more PSP games. Steve, I will send you the list you requested as soon as Jason is feeling a little better. Also, Marissa, I had a request to get 4 "live strong" bracelets from Marjorie. I remember you have one, so maybe you know how to get them for us? Suprisingly, they don't sell them here at the hospital but everyone around us seems to have them.
So even though Jason had a rough day today, he has gotten through the worst of it and will now be allowed to recover for a while. He has shown so much strength and courage this week. I could not be more proud of him. He would keep getting treatments if the doctor would let him, unfortunately, his body is telling him it is time to stop. We are all very optimistic that these treatments will work and again we want to thank all of you for your encouragement!
At about 1 pm this afternoon, things took a turn for the worse. It started with nausea, and then his blood pressure started to drop. It kept dropping...and dropping. The lowest it got was about 52 over 30 so we were all very worried. He also did not look well. He kept getting dizzy and lightheaded. He was clammy and covered in sweat. His nurse Rikki was wonderful. She kept on top of things all day. She put him on two separate blood pressure medications and right now he is at 100 over 52, which is a big improvement. He is also looking much better.
So after a discussion with his doctor, he thought that this should be Jason's last dose for his first course of Interleukin therapy. We were hoping to get to about 8 doses, but the doctor assured us that a patient is either a reponder or not, and the number of doses does not correlate with whether it will work or not. He thought that 6 was an adequate number of doses and that it wouldn't be worth it to push Jason any further at this point. So Jason will stay in the ICU until he can maintain his blood pressure without the medication. Then he will be moved to a regular hospital room for a day or two of recovery before he is allowed to come back with us to the townhouse. In two weeks we start this all over again.
I will continue to stay nights at the hospital with Jason while Terry and Marjorie have been running all kinds of errands to get the townhouse liveable and ready for Jason's arrival. They have also been spending as much time visiting Jason as the hospital allows and keeping everyone up to date with the blog.
There have been a lot of inquiries about what Jason might like or need. Everyone's comments have really meant a lot to him and we can't thank you enough for sending them. Everyone has been so encouraging! If anyone would like to send him a card, that would be great also. The address is finally posted in the blog. I also managed to force Jason to create a short Amazon wish list if anyone is interested. The link is attached in the blog below. Jason also likes gift certificates to Game Stop or Best Buy. He could also use a pair or two of comfy XL pajama bottoms. He usually wears his own T-shirts with them, so he doesn't need the pajama tops. Jason's buddies Steve and Jim are well connected at Playstation, so we will not be needing any more PSP games. Steve, I will send you the list you requested as soon as Jason is feeling a little better. Also, Marissa, I had a request to get 4 "live strong" bracelets from Marjorie. I remember you have one, so maybe you know how to get them for us? Suprisingly, they don't sell them here at the hospital but everyone around us seems to have them.
So even though Jason had a rough day today, he has gotten through the worst of it and will now be allowed to recover for a while. He has shown so much strength and courage this week. I could not be more proud of him. He would keep getting treatments if the doctor would let him, unfortunately, his body is telling him it is time to stop. We are all very optimistic that these treatments will work and again we want to thank all of you for your encouragement!
Wednesday, August 13, 2008
Treatment Times Two
ICU Bling
Today Jason received his third, fourth and fifth doses of Interleukin 2. The doctor told him this morning that he had about a day and a half to go for this first round, which would be 8 treatments. The 3rd and 4th went well with little discomfort. Tonight the 5th was not the same story. He had bad chills and nausea. The nausea was the worst so far. For us the bad part was that we could not be there to help. They gave him the medicine at about 5:30. We had to leave at 6:00, (they kick all visitors out between 6:00 and 8:00, both A.M. and P.M.) He didn’t start to get a reaction until after we were gone. His reaction did top out just after we got back so he had us there to help with the worst part. When Marjorie and I had to go he was beginning to feel a little better, nausea way down but sore all over.
While we were ousted we used the time to go to Sonic Burger – a first drive-in experience for Debby - and then the new townhouse. We are now happy renters.
The new address for the next three months is:
After Debby and Marjorie took their first class for intravenous catheter care, Debby went back to the hotel at noon to get cleaned up and take a nap (the chair does not sleep all that well) and to pack. We move in to the townhouse tomorrow. Debby will get back to submitting items for the blog when Jason gets home.
Joe, we want to wish you a very Happy Birthday! Another Leo!
Carol, you thought
Mom & Dad
Tuesday, August 12, 2008
Day One of Treatment
ET SAYS "OOOUCH"
Today was the first day of the Interleukin 2 treatments. They woke Jason and Debby up at about 8:30, yes Debbie spent the night with him. The easy chair converts into a bed. Jason’s bed troubles him some. It adjusts the lumbar support and firmness every time he changes positions. To me (Terry) that would be a dream, but he finds it irritating.
At 9:00 the team came in and administered the treatment. All went well. The only side affects that Jason felt were chills (for about 15 minutes) and nausea. He had a bit of trouble eating breakfast and even more trouble with lunch.
The second dose was at 5:00 P.M. The only trouble this time was the chills, a little worse than the first time but they gave him some new drug that knocked them, and any other pain, down for the count. He recovered well and had a good appetite tonight. It seems that he is handling the treatments better than most as they say few eat anything the first two, sometimes three days.
Debby is in trouble! They are spoiling him with heated blankets and meals on demand and more attention than he has ever had before.
As if they don’t wake him enough at night, the next treatment is scheduled for 1:00 A.M. Do you see a pattern here? The doses are given every eight hours, and continue as long as he can handle them. Most only get eight and that is our target. The record is fourteen.
As cell phones are verboten in the ICU, Jason can not read the blog himself at this time. Debby can go to the lobby and read it and pass comments along to Jason. Starting on Wednesday we will be printing them out for him, so keep the comments coming. They mean a lot to Jason, Debby and us.
Mom and Dad
Monday, August 11, 2008
300 Billion Spartans!
Jason’s Visualization of His Immune System Fighting the Cancer
I’m not as good at this as Debby and Jason are, but I’ll try. It was a long day, but a little easier than we all thought it was going to be.
Jason had his intravenous tubes put in – he said it actually wasn’t too bad – they drugged him pretty good. Then he had to go down for x-rays to make sure it was in right.
We then saw Dr. Kim again to get Jason checked out one last time before getting admitted, a two and one half hour wait. Then we headed back to the dreaded diagnostic lab to get more blood taken - five more tubes - because he’s participating in a research study to find “different protein expressions and how they influence interleukin 2 as a melanoma treatment (Debby’s words of course). It won’t help him, but it will help future patients. And at Debby’s request they’re going to check if we can get the results of Jason’s study that we can compare with preliminary study results.
When we finally found Admissions, they couldn’t admit him until after 7:00 tonight so we came back to the hotel for a few hours to relax.
Marjorie and Terry
Sunday, August 10, 2008
Next stop...ICU
Not sure when my next blog will be. Tomorrow I get the IV inserted into one of my main veins leading to the heart and I spend the next week in the ICU while being administered an aggressive treatment. Word on the street is it wont be a fun week and the weeks following for recovery might be a long road as well. At least I know what to expect and the whole process has proven to be relatively safe. Still there's that nervous feeling about spending a week in a strange place where people are giving me stuff that they know will make me feel like shit.
On the brighter side, I received the package of brownies Pat sent - Thank You. Everyone loves them and you were right, they brightened up our day. Now we have a desert every night for the next 2 weeks probably.
Ron and Cristina, a big thanks goes to you as well. The beer mug vase with the flowers for Debby cracked us up. Very original and it is currently the center piece in our hotel.
It's my Mom's birthday tomorrow but we decided to celebrate it today instead. So in honor of her we took her to see Pineapple Express, she said something along the lines of it expanding her horizons. There were four of us and the movie got 3 1/2 thumbs up. You can guess who gave it the 1/2 thumb. Later to make up for it we searched around for a nice Italian restaurant but ended up settling for one more casual.
So that's is...tomorrows the beginning of what we hope to be a very successful treatment. Hopefully the first attempt works and I can get out of this place and back home working on our place and drinking some home brew.
Jason
Saturday, August 9, 2008
Early Saturday
It was a long day at the hospital yesterday, but the hospital has thought of everything. Debby already told you a little about it. Their ‘hospitality’ rooms have little mini marts, a computer with printer, craft kits for those so inclined, chairs, and tables – with a jigsaw puzzle on every table. The adjacent room is dimly lit with recliners and couches (with pillows and blankets) for those who want to sleep or rest between appointments/treatments. If you’re alone, they’ll wake you in time for your next appointment. And for appointments at the Mays Clinic, which is in another building, they offer golf cart rides to get there through an air conditioned ¼ mile enclosed bridge.
The hospital also offers free classes for patients and their families – not only those specific to cancer, but their wellness center offers yoga, tai chi, Pilates, massages, and lectures.
Today Jason is recuperating from the excision he had yesterday. Debby didn’t mention that the surgery yesterday took more than just cutting. The doctor told Jason that the smell of burnt meat was just Jason burning. They use electric arc cauterizing before sewing him up. The burn part seems to be causing the most pain for him today. Today will be very calm – it’s probably a movie day. You might even get a movie review or two, Brian!
Joe & Kathy - we just wanted to thank you for the dinner too. That was very nice of you.
Carol, Sue & Mindy (Brian & Amy too?) - hope you have a great time at the Ohio State Fair - eat a funnel cake and a couple of elephant ears for us!Marjorie & Terry
Friday, August 8, 2008
Fun Friday
Today was a long day that started with us waking up at 5:45 in the morning and racing to the MD Anderson Diagnostic Center to beat the crowds. We were too late, it was already pretty busy. As Jason says “old people get up early”. They had to take 16 large vials of blood. Jason said they actually ran out of blood from the vein at the elbow and had to take more from a vein on the top of his hand. He said he felt pretty dizzy after that and he wasn’t even allowed to eat a cookie or anything because he had to fast for 5 hours before his cardio echo stress test. After the blood draw they took some chest x-rays.
Next, the four of us had to watch a video about the insertion of a Central Venous Catheter. Jason will be getting one inserted under his collar bone on Monday in order to get the Interleukin 2 infusion therapy. Marjorie and I are the lucky ones that get to attend two 90 minute classes on care of the catheter because Jason will have it in during his recovery periods. We will be learning sterile technique for dressing changes, daily catheter flushes with heparin solution, and changing the heparin cap every two weeks. It is very important that the catheter does not get infected because it is inserted into a vein that goes straight to the heart.
Next on the list was a complete pulmonary function test which consisted of breathing into boxes. Jason says he passed with flying colors. There was some time to waste before his cardio testing so Jason and I took a nap in the nap room and Terry and Marjorie worked a puzzle.
Jason says the cardio echo stress test was the worst part of the day. He was in a small room with 5 other people all looking at various monitors. What is pretty funny about the situation is that they actually had him use his iPhone to work out some calculations for them because their calculator was broken. Instead of making him run on a treadmill, they gave him an adrenaline type drug through an IV to make his heart rate go up. He said he felt like his heart was going to explode through his chest. Not a pleasant experience! He finally came out of the room two hours later and was shivering all over. He looked pretty beat. We gave him some pretzels to eat and took him up to the Melanoma Center to await his surgery.
We thought the surgery would be the hardest part of the day for him, but he was literally in and out of there in 30 minutes. He said the surgeon was cracking jokes to put him at ease and it didn’t hurt at all. So now instead of a tumor, he has 10 stitches on his stomach. Now…to get rid of the tumors in the liver and lung!
On the way home, we stopped for a gourmet Texas dinner at Taco Bell and Jason has been resting since. We plan to watch the Olympic Opening Ceremonies tonight on TV.
Again we want to thank everyone who is following the blog and posting encouraging comments. Jason has them sent straight to his iPhone and he enjoys reading them while in the hospital. I’ve had a few requests to put together some ideas for items Jason might enjoy while in the hospital. I will have him compile a wish list this weekend and should have a permanent address for people to mail things to by next Wednesday. We really, really appreciate all of the support from family, friends, and co-workers!
We are very happy that we decided to come to MD Anderson. We understand now why it is rated one of the best cancer centers in the world. Everyone that we have met, both staff and patients, have been extremely kind and encouraging. The hospital has every possible amenity to make patients and family members comfortable. It really is an ideal environment for healing. I cannot say enough good things about the hospital at this point and I am confident that we made the right decision in coming here.
Next, the four of us had to watch a video about the insertion of a Central Venous Catheter. Jason will be getting one inserted under his collar bone on Monday in order to get the Interleukin 2 infusion therapy. Marjorie and I are the lucky ones that get to attend two 90 minute classes on care of the catheter because Jason will have it in during his recovery periods. We will be learning sterile technique for dressing changes, daily catheter flushes with heparin solution, and changing the heparin cap every two weeks. It is very important that the catheter does not get infected because it is inserted into a vein that goes straight to the heart.
Next on the list was a complete pulmonary function test which consisted of breathing into boxes. Jason says he passed with flying colors. There was some time to waste before his cardio testing so Jason and I took a nap in the nap room and Terry and Marjorie worked a puzzle.
Jason says the cardio echo stress test was the worst part of the day. He was in a small room with 5 other people all looking at various monitors. What is pretty funny about the situation is that they actually had him use his iPhone to work out some calculations for them because their calculator was broken. Instead of making him run on a treadmill, they gave him an adrenaline type drug through an IV to make his heart rate go up. He said he felt like his heart was going to explode through his chest. Not a pleasant experience! He finally came out of the room two hours later and was shivering all over. He looked pretty beat. We gave him some pretzels to eat and took him up to the Melanoma Center to await his surgery.
We thought the surgery would be the hardest part of the day for him, but he was literally in and out of there in 30 minutes. He said the surgeon was cracking jokes to put him at ease and it didn’t hurt at all. So now instead of a tumor, he has 10 stitches on his stomach. Now…to get rid of the tumors in the liver and lung!
On the way home, we stopped for a gourmet Texas dinner at Taco Bell and Jason has been resting since. We plan to watch the Olympic Opening Ceremonies tonight on TV.
Again we want to thank everyone who is following the blog and posting encouraging comments. Jason has them sent straight to his iPhone and he enjoys reading them while in the hospital. I’ve had a few requests to put together some ideas for items Jason might enjoy while in the hospital. I will have him compile a wish list this weekend and should have a permanent address for people to mail things to by next Wednesday. We really, really appreciate all of the support from family, friends, and co-workers!
We are very happy that we decided to come to MD Anderson. We understand now why it is rated one of the best cancer centers in the world. Everyone that we have met, both staff and patients, have been extremely kind and encouraging. The hospital has every possible amenity to make patients and family members comfortable. It really is an ideal environment for healing. I cannot say enough good things about the hospital at this point and I am confident that we made the right decision in coming here.
Thursday, August 7, 2008
My Turn Again
My turn again to blog it looks like. I want to thank everyone who has posted comments and has been sending emails. I would love to reply to to all of them individually but I don't think I have the time or the energy right now. Just know that we love reading them and they always cheer us up.
The last few days have been kinda rough on me physically. I'm not getting a full nights sleep, been waking up to fevers and some pain. We believe this is because they asked I stop taking Ibuprofen (get to why in a bit) and it was probably keeping the symptoms at bay. Other than that I'm still doing pretty good as long as I'm on the pain meds I can take.
Today was good, we were asked to come in and have the surgeon take a look at the melanoma on my belly, it's about the size of a dime, almost too small for them to work with but they figured it couldn't hurt. Whats surprising is it really hasn't grown much in the last couple weeks and this "might" be due to this mushroom extract Debby's been feeding me three times a day. Its given via a dropper so I cant help but feel like a baby bird.
The best part of the day was all Debby's doing. She was able to find a nice 2 bedroom gated community for a very very nice price which helps out tremendously. The owner was willing to do a 3 month lease and was extremely nice. So it looks like we'll have a more permanent address by next Wednesday, only a few minutes from the hospital.
Tomorrow will be a busy day. We go in early for a pre-procedure assessment interview, then a couple tests to check my heart and lungs which will take several hours. They need to confirm I'll be able to survive the treatment but no one seems worried because of my age and I don't smoke so I'm not too concerned either. I'm also having the melanoma talked about above, and in the picture, extracted and sent to the lab. With it they hope to grow a bunch of little fighter T cells they can later inject back into me (TIL study). Sometime between all this I get more blood work done and some more x-rays.
I have to thank Debs parents for dinner tonight, we went to Chile's where my Dad was finally able to get some ribs. - Thanks
Jason
Wednesday, August 6, 2008
Wet Wednesday
Today was to be a day of rest and exploration. We enjoyed a late reveille and leisurely breakfast. Jason was a little more fatigued than usual so we decided on an outing that would not require much walking - NASA Space Flight Center.
We had some interesting weather just trying to get the 19 miles to the center. Jason was driving when we hit one of the heaviest downpours that any of us have ever experienced. At times we could see just beyond the hood. Luckily this did not last too long and the sun was out when we arrived. We thought we were done with the storm but the weather ended up canceling the tram tour, the reason we went there. We cut the trip short but hope to go back this weekend.
We drove by the townhouse we hope to rent next week and were very impressed. The neighborhood is pleasant and it and the surrounding communities are gated and secure. It is just two to two and ½ miles from MD Anderson. From what we have seen on the internet and the drive-by we think it will be great for Debby and Marjorie when Jason is in treatment and even better for Jason during the recovery weeks.
We splurged on supper. Marjorie and I walked across the hotel parking lot to pick up Pizza Hut pizzas. After watching Ironman on Pay Per View we called it a night.
Dad
Tuesday, August 5, 2008
News for Tuesday
Tuesday started out exciting – we woke up to a lot of rain - - but no hurricane. It would have been so much more interesting to watch from our 8th floor windows than just rain - we can get that at home (if not very often).
Jason got to sleep in today – so that’s a good day for him. We all talked him into getting some exercise today – walking a mall of all things! It was
It was a relaxing day, so it was nice. We’re so glad we can be here with Jason and Debby. We just want him to know we are here to give him any support we can, even though it doesn’t feel like enough.
Talk about support - Debby is a miracle worker! She has used the internet to find so many great things that are helping Jason while awaiting the doctor’s work. We are calling ourselves Team Jensen.
Debby also spent much of last night and this morning searching for a long term place to stay while Jason is going through the treatments. We’re so hoping the place we’re going to look at Thursday is a winner – it’s like 2 miles from the hospital. It is a two bedroom townhouse in a gated community with a two car garage, furnished. Isn’t the internet wonderful????
Mom
Monday, August 4, 2008
Bubble Girl's Blog, First doctor appt.
Today we went to Jason’s first doctor appointment at MD Anderson. The hospital is huge, but very nice. There are fish tanks with tropical fish on every floor. There are lazy-boy recliners for the patients to lie down in while waiting for appointments. There are even tables with games and puzzles to pass the time. We first registered with the Melanoma Cancer Center and then we were told to go downstairs to the Diagnostic Center so he could have blood drawn. It was a scary place. There were over 100 people waiting to get their blood work done, and many of the people had bald heads from chemo and face masks to protect themselves from germs. Seeing so many sick people was a little overwhelming for all of us. Luckily the hospital is so large, they were calling about 10 people at a time to get their blood drawn and the whole process only took about half an hour.
Next, Jason was assigned a nurse, a physician’s assistant, and a medical oncologist. Each person spent a lot of time with us and did a thorough patient history and physical exam. Jason’s oncologist is Dr. Kim. He is very knowledgeable and a straight-shooter. I was very impressed by him. Since Jason has already has so many diagnostic tests completed in San Diego, we were able to already talk about treatment options at our first appointment. Since Melanoma is an aggressive cancer, we all agreed that Jason would need aggressive treatment. He is young, in good health, and should be able to handle whatever they throw at him.
One promising treatment that I have been reading about that they are currently conducting clinical trials for is called TIL (Tumor Infiltrating Lymphocytes). Basically, they remove one of Jason’s tumors and grow the surrounding T-cells that are all ready trained to kill melanoma. They grow billions of copies of these T-cells and inject them into his body along with high doses of Interleukin 2 (which ramps up his immune system, “Cytokine Therapy”). This is a Phase 2 clinical trial so there will be no placebos and all patients get the same dose and treatment. During Phase 1 trials, they had over a 50% success rate with melanoma tumor shrinkage. The only downside of this therapy is that it can take 2 months to grow the billions of T-cells needed for the injections. Jason has a lump that has been growing on his stomach that they are pretty sure is melanoma, so instead of having to do surgery on his lungs or liver to remove a tumor, they can probably excise the tumor on his stomach. The only problem is that it is only 1 cm, and they said that usually larger tumors work better for the therapy. So our oncologist is meeting with a team of other surgeons and oncologists today to discuss Jason’s case to decide if they should remove the tumor now, or wait until it’s a little larger.
We would really like to participate in this clinical trial, but we will be starting therapy in the meantime while we wait for his T-cells to grow. We have two choices. One is to start right away with the high dose of Interleukin 2. The other choice is what’s called Bio-chemotherapy. It is a combination of Interleukin 2, chemotherapy, and interferon alpha. Both of these therapies are very aggressive. Jason will need to stay in the hospital for 7 days, then will get 2 weeks of recovery time. Then he starts the cycle over again. They can do up to 6 cycles, but they usually do two cycles and run a CT scan to check for shrinkage. If the therapy isn’t working, then we switch to a different type of therapy.
Sorry for the long blog filled with medical jargon, but we got a lot of information today and I figured some of you might want the details. The doctor said the main thing to keep in mind is that each person is different. The first therapy we try might not work, but then we just switch until we find something that does. He was very positive, but at the same time, warned us that Melanoma is a hard cancer to fight. Luckily there are many new treatment options and if we can buy some time, there will be even better ones in the future.
On Friday Jason will spend all day in the hospital. They will run a lot of diagnostic tests on his heart and lungs to make sure he will be able to handle the aggressive therapies. On Monday he will be admitted into the hospital and therapy will begin. We got a phone call tonight and they told us that he will have his own private room in the ICU unit and I am even allowed to stay the night with him. I thought that was absolutely wonderful! One quick note, he is not allowed to receive any flowers. So if anyone wants to send gifts, I suggest PSP games J I can give recommendations if anyone needs them. We probably won’t have a lot of therapy related news until next Monday, so in the meantime we will just let you know what we are up to. If anyone is interested in coming out to visit, we will be securing corporate housing in the near future and I’m sure Jason would love to have visitors during his recovery weeks. So I can let people know good times to visit and you are welcome to stay with us.
Next, Jason was assigned a nurse, a physician’s assistant, and a medical oncologist. Each person spent a lot of time with us and did a thorough patient history and physical exam. Jason’s oncologist is Dr. Kim. He is very knowledgeable and a straight-shooter. I was very impressed by him. Since Jason has already has so many diagnostic tests completed in San Diego, we were able to already talk about treatment options at our first appointment. Since Melanoma is an aggressive cancer, we all agreed that Jason would need aggressive treatment. He is young, in good health, and should be able to handle whatever they throw at him.
One promising treatment that I have been reading about that they are currently conducting clinical trials for is called TIL (Tumor Infiltrating Lymphocytes). Basically, they remove one of Jason’s tumors and grow the surrounding T-cells that are all ready trained to kill melanoma. They grow billions of copies of these T-cells and inject them into his body along with high doses of Interleukin 2 (which ramps up his immune system, “Cytokine Therapy”). This is a Phase 2 clinical trial so there will be no placebos and all patients get the same dose and treatment. During Phase 1 trials, they had over a 50% success rate with melanoma tumor shrinkage. The only downside of this therapy is that it can take 2 months to grow the billions of T-cells needed for the injections. Jason has a lump that has been growing on his stomach that they are pretty sure is melanoma, so instead of having to do surgery on his lungs or liver to remove a tumor, they can probably excise the tumor on his stomach. The only problem is that it is only 1 cm, and they said that usually larger tumors work better for the therapy. So our oncologist is meeting with a team of other surgeons and oncologists today to discuss Jason’s case to decide if they should remove the tumor now, or wait until it’s a little larger.
We would really like to participate in this clinical trial, but we will be starting therapy in the meantime while we wait for his T-cells to grow. We have two choices. One is to start right away with the high dose of Interleukin 2. The other choice is what’s called Bio-chemotherapy. It is a combination of Interleukin 2, chemotherapy, and interferon alpha. Both of these therapies are very aggressive. Jason will need to stay in the hospital for 7 days, then will get 2 weeks of recovery time. Then he starts the cycle over again. They can do up to 6 cycles, but they usually do two cycles and run a CT scan to check for shrinkage. If the therapy isn’t working, then we switch to a different type of therapy.
Sorry for the long blog filled with medical jargon, but we got a lot of information today and I figured some of you might want the details. The doctor said the main thing to keep in mind is that each person is different. The first therapy we try might not work, but then we just switch until we find something that does. He was very positive, but at the same time, warned us that Melanoma is a hard cancer to fight. Luckily there are many new treatment options and if we can buy some time, there will be even better ones in the future.
On Friday Jason will spend all day in the hospital. They will run a lot of diagnostic tests on his heart and lungs to make sure he will be able to handle the aggressive therapies. On Monday he will be admitted into the hospital and therapy will begin. We got a phone call tonight and they told us that he will have his own private room in the ICU unit and I am even allowed to stay the night with him. I thought that was absolutely wonderful! One quick note, he is not allowed to receive any flowers. So if anyone wants to send gifts, I suggest PSP games J I can give recommendations if anyone needs them. We probably won’t have a lot of therapy related news until next Monday, so in the meantime we will just let you know what we are up to. If anyone is interested in coming out to visit, we will be securing corporate housing in the near future and I’m sure Jason would love to have visitors during his recovery weeks. So I can let people know good times to visit and you are welcome to stay with us.
Sunday, August 3, 2008
Day One and Nothing to Do
Hello everyone,
I first have to let you know that blogs and such things have never been my thing, so I apologize if mine are short and don't give too much information. Debby will also be posting so I'm sure you'll get more out of her posts.
We just arrived in Houston TX.....yeeehaaaaa! Its overcast and HOT..in the 90s. Our suite at the Holiday Inn is nice. Kitchen, dining room table, little living area and two bed rooms. One for Deb and I, the other for my folks who also came out with us. Having them around will help alot I'm sure.
Right not we're still exploring the room, putting together a grocery list and deciding what we're going to do for dinner. The flight was good for everyone but my dad who happened to get three little boys traveling alone and sitting right behind him.....HA
That's it for now...I'm starting to get nervous about my first appointment tomorrow with the doc, every things starting to happen and making it all very real.
I'll add images once I figure out how. (ok..I did...picture is the view from our hotel)
Jason
I first have to let you know that blogs and such things have never been my thing, so I apologize if mine are short and don't give too much information. Debby will also be posting so I'm sure you'll get more out of her posts.
We just arrived in Houston TX.....yeeehaaaaa! Its overcast and HOT..in the 90s. Our suite at the Holiday Inn is nice. Kitchen, dining room table, little living area and two bed rooms. One for Deb and I, the other for my folks who also came out with us. Having them around will help alot I'm sure.
Right not we're still exploring the room, putting together a grocery list and deciding what we're going to do for dinner. The flight was good for everyone but my dad who happened to get three little boys traveling alone and sitting right behind him.....HA
That's it for now...I'm starting to get nervous about my first appointment tomorrow with the doc, every things starting to happen and making it all very real.
I'll add images once I figure out how. (ok..I did...picture is the view from our hotel)
Jason
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