Ringing the Ship's Bell

Yesterday was Jason’s fifth and last radiation treatment. It was a success in that it did gradually reduce the pain in his eye each day and for the first time yesterday, he had no pain (just still uncomfortable)! The Radiation Clinic now has a tradition that when radiation treatment is complete, the patient gets to ring a ship’s bell to announce he’s finished. So Jason got to ring the bell and everyone in the waiting room applauded as we left, and wished him well. A Navy captain had gotten treatment there for 2 months every day and felt like it was his second home. When he left, he wanted to give them something. He said whenever he left the ship, they would ring a bell announcing his departure. So he gave them a ship’s bell and now all patients get to ring it when they’re finished. And he took his mask home with him. I’m sure he’ll figure out something to do with it!

In the last 24 hours we have seen the swelling in his eye decrease dramatically and the color looking so much better. He’ll follow up with the eye clinic on Friday.

On Monday when we saw Dr. Kim, he told us they couldn’t get Jason in for TIL study treatment until February because they were so booked up. Dr. Kim wants to give Jason another type of chemo until he can get him in, but Jason needs to get his strength back before they can do it. The radiation left him very weak and tired. It takes about 2 weeks for the side effects of the radiation to subside, so he’ll check him in another couple weeks.

Terry left on Monday and Joe came back Monday night. With Debby being sick and Jason so weak, we needed help and he graciously said he would come back and help us out as long as we needed him. We are so thankful!

Debby’s feeling a little better today, so hopefully she’s on the mend.

And we got our baby swiss cheese from Ohio! Joe’s munching on a cheese sandwich and loving it. Thanks a lot, Carol!

Marjorie

One Less Nurse Jensen

Jason’s estimated 20 minute follow-up appointment with the ophthalmologist the day after Christmas turned out to be 4-1/2 hours. But what they were able to accomplish in that time was amazing, because all of the clinics were really still closed for the holiday. He did an ultrasound of Jason’s eye which showed that the tumor had grown since October. He brought in a senior ophthalmologist for consultation and they decided that radiation was the next step to hopefully shrink the tumor and stop the pain.

We called Debby and let her know what was happening and the entire family came in and shared the rest of the day with us. This gave Jason and Debby much needed support during this trying decision making. We even had a little time between mask making and first treatment to sample “Café Anderson” with the few that had not yet eaten there.

It took the senior ophthalmologist almost an hour and many many phone calls before she was able to reach the right on-call emergency radiologist to get treatment started immediately. She was very frustrated and embarrassed that it took so long and was very close to calling the hospital administrator to complain about the service. This threat resulted with the heard of nuclear medicine coming in to see Jason and get his treatment started. This is just one more example that shows the dedication of the hospital staff, both of the ophthalmologists were supposed to be off earlier to start their own holidays but stuck around to insure Jason got the treatment he needed.

They first made the mask used to position his head for the very exacting radiation treatment. It looks like a white mesh grid in the shape of his head. They then did a CT scan with the mask still on him to determine exactly where they were going to aim the radiation. As Debby said, the actual treatments take about 15-20 minutes. To start with, he’ll get radiation treatment every day for 5 days. During the first 2 treatments he fell asleep – could be all the pain medication had something to do with that. Terry and I took Jason to his third treatment this morning. Jason’s treatment today went smooth and quick. He said each day his eye is feeling a little better, with what he classed as 8 out of 10 on Christmas Day he now says is about a 2, so that’s very encouraging. Tomorrow will be a very busy day with blood tests, an appointment his oncologist Dr. Kim, an appointment with the ophthalmologist, and radiation treatment. Somewhere in there we have to get Terry to the airport.

Debby’s out of commission today – she’s really tired with a painful cough and feeling like there is fluid in her lungs. She slept most of the day. She woke up as Jason began a nap and we watched “Momma Mia”, not a Jason type of film. Later she told us she was feeling very ill. She has all the symptoms of a bad case of the flu. We are now giving her Emergen-C and Airbourne as advised by a pharmacist. She is staying away from Jason and wearing a mask to help keep him well.

Tonight we attempted to duplicate Lorren’s corn-potato soup, it turned out to be very good!

Mom and Dad

Christmas at the ER

Merry Christmas Everyone!

These are pictures from Christmas Eve since we spent the majority of Christmas at the ER. We had a great Christmas Eve. We woke up to hot cranberry-orange muffins that Marjorie had baked. We went to church, watched 2 movies, one about the Star of Bethlehem and the other was the funny classic A Christmas Story. We continued to make ornaments using paint, pens and glitter glue. We even made a few shrinky dink ornaments. Then we followed the Stradley Christmas Eve cheating rule and we all got to open one present each. Marjorie had crocheted really cute beanie hats for everyone, so we opened those. Since Jason and I already had our beanies we opened other gifts. I opened a beautiful pair of earrings that my mom got from "A Greater Gift." This company helps fight poverty by allowing people from around the world to sell their crafts through fair trade. Here is the website if anyone is interested.

www.agreatergift.org

They have some wonderful gifts and its for a good cause! Jason opened Lance Armstrong's "It's Not About the Bike" in audio. Since he is having trouble with his eyesight, I thought the book on CDs was a good idea for him. Marjorie and I both read the book and really liked it so hopefully Jason will like it too.

On Christmas morning, Marjorie, Terry, Becky and I made two different quiches. One vegetarian and one for the meat eaters that even had apple in it. They tasted great. We also had a cocktail made up of champagne, orange juice and grenadine, and sliced oranges with cinnamon. We had just started our first round of present opening which included Jason and I passing out the flying monkeys that Kristy sent us. Flying monkeys were going everywhere...it was a blast. Unfortunately Jason made a sudden ducking movement to avoid an out of control flying monkey and all of a sudden everything went black in his left eye (the one with the tumor). Then he started to get such an intense pain...so bad that is caused a severe headache and continuous vomiting. All 8 of us rushed him to the ER. We suspected that his retina had detached.

We got to the ER and it was pretty empty so they took us right back. Its funny how no one has emergencies on Christmas. You know that the people who were there really needed to be there. We saw the ER doctor and he was honest with us and told us he didn't know much about examining the eye. He could see Jason's tumor and that's about it. He was kind enough to put Jason on IV fluids, pain, and nausea medication. But the pain was so bad, the pain medicine didn't even make a dent. Jason's face was drenched in sweat as well, either from the morphine or the pain, I'm not sure which. They called up the on-call Opthamologist and on-call Melanoma Medical Oncologist. Both showed up about 2 hours later...an excruciating 2 hour wait for poor Jason.

Both doctors were great. The Opthamologist checked Jason's eye and said it looked like the retina had detached. He said that while the tumor was growing, it was getting slowly detached and it had probably more completely detached and that was why Jason could no longer see any light in that eye. He said that a detached retina is not painful so he checked the interocular pressure (IOP) in both of Jason's eyes. Jason's right eye was 11, his left eye was 54. Normal is from 8 to 20. The Opthamologist said that Jason's tumor was causing glaucoma which was causing the intense pain. He thought the IOP could be easily brought down through medication and eye drops. He was wrong...

We started with 2 kinds of eye drops, put in Jason's eye every 5 minutes for 30 minutes. Then he checked the pressure and it had dropped down to 47. This was a promising start, so he added another 2 types of drops and continued to put 4 drops into Jason's eyes every 5 minutes for another 30 minutes. When he checked the IOP again, it was still at 47...not good. So then he gave Jason an IV diuretic. It had to be ordered from the central pharmacy and took 45 minutes to get to the ER. The Opthamologist waited for 45 minutes after the diuretic had been given, then checked Jason's IOP again, no change. So he then discussed with all the other doctors if a really really strong diuretic should be used. The risk was his blood pressure could drop significantly and his IOP in the other eye could drop too low and cause problems. Jason was is so much pain, we just said hurry up, we'll try anything. So we had to wait another 45 minutes for the medication to show up from the central pharmacy. This diuretic had to be infused for 1 and a half hours. Then the Opthamologist had to wait an additional half hour before he measured the IOP again. After all this, NO CHANGE. The Opthamologist told us he had never seen a patient not respond to this medication.

Meanwhile, the whole entire family is waiting in the ER waiting rooms. Only one person was allowed back with Jason. So I continuously ran out to give them updates. Finally, at 11 pm Christmas night, the Opthamologist said he gave up and to come back to his clinic in the morning. He didn't know what else to do outside of surgery or taking Jason's eye out. They handed me some diuretics for Jason to continue to take at home, 3 types of eye drops, and told me to ramp up his pain meds a lot. We finally made it home at 11:59 PM Christmas Evening. Oh Boy! Jason and I were very depressed about missing Christmas. He was in pain and we had both been looking forward to Christmas for weeks, we were heartbroken. Thank god the rest of the family was there to support us. I don't know what we would have done without them. It was definitely one of the most stressful and difficult days we have been through so far. I was starting to feel sick, the stress from seeing my husband in so much pain and being in the ER for 10 and a half hours was starting to take a toll. I asked if Terry and Marjorie could take Jason into the clinic in the morning. When we woke up, Jason's eye was extremely red, and very, very swollen. It looked like a severe allergic reaction. I got Jason dressed and Marjorie and Terry took him to the clinic along with my Dad.

You will have to read Marjorie's next blog to hear all the details from the clinic visit. It sounds like after much hassle, multiple Opthamologists looked at and discussed Jason and they were able to get in some radiologists that were on-call to come in and they all decided it was time for Jason to start radiation in his left eye to shrink the tumor and get him out of pain. My Dad called me and told me the plan, and the rest of us hurried to the hospital to be there for Jason. They did a CT scan on his eye so they knew exactly where to target the radiation. They made a mask to protect the rest of his face. Then they gave him his first radiation treatment. The radiation treatment itself only took about 15 minutes. There was quite a bit of prep time, but in the future everything will be already set up and should go much quicker.

When we finally got home, it was about 4:30 in the afternoon. It was finally time to open presents!!! Unfortunately, Jason was pretty doped up from the high amount of morphine and dilaudid we had to give him to try to keep him as comfortable as possible. He could barely stay awake. We decided to let him open all his gifts first so he could go back to sleep. We both made out! He got Rock Band 2 complete with a bass guitar and cymbal expansion pack. We both got a really nice Garmin GPS. We have been spoiled using Marjories the whole time we have been in Houston so now we will have our own. We both got a multitude of great giftcards, books, Jason got a video game (Gears of War 2) and computer game (Spore), and I got a pair of comfy boots, a pretty necklace, scarf and hat. We also got Wall-e and Dark Knight on Blu-Ray. Jason got me a beautiful set of pearl earrings I will forever cherish. I think everyone was pretty happy with their gifts. Santa was good to us!

Thank Yous

I have so many people to thank. I planned on calling a lot of people on Christmas day, but unfortunately that didn't work out. We got quite a few gifts in the mail right before Christmas and that was great because Christmas itself didn't go so well. I would love to send out thank you notes to everyone, but the upcoming week is going to be very busy. Jason is scheduled for radiation appointments every single day including over the weekend and I have to work really hard at getting him admitted into the TIL study as soon as possible. So for now, consider this my deepest and sincerest "Thank You!" You are all much loved and appreciated.

Jason and I wanted to thank Zack and family for the amazing box of presents. The fudge was delicious that I assume Lauren made. I can't believe it managed to stay cold! Jason and I had a lot of fun eating the types of candies we haven't had in years. The teas were great too. My mom and I are hooked on the ginger tea, and I just tried the sugar plum last night and loved it. I will have to buy more of those if I can find them. I am a little worried about the puzzles, but Jason is excited. Jason and Marjorie had to talk me into doing a 1000 piece puzzle last time, and now we have 2 different Van Gogh 2000 piece puzzles. I'm a little apprehensive, but the rest of the Jensen's are puzzle people and are up to the challenge. We will post pictures when (if?, hehe) we get each puzzle completed. Thanks again for everything!

Thank you Andy for the great Vegetarian cookbook from Sonoma. I've only had a chance to glance at it because of everything that has happened, but it looks like there are some delicious recipes. I particularly like some of the soup recipes and I think they will be very nutritious for Jason. We also really liked the kind message you wrote inside.

My Grandpa doesn't have Internet, but he sent a very generous card and I wanted to thank him and send him all my love and tell him I miss him.

Thanks to the Beals for the gifts from Hawaii. The pancake mix sounds like it will make delicious pancakes and the body spray smells like I'm on a tropical island.

Deven, Jason wanted to thank you for the gift card. It was very generous of you! I hope you and your family had a great Christmas and that Santa was good to Katie!

I also wanted to re-thank the Woods. My sister mentioned your gifts in her blog, but I wanted to thank you too. I will take a picture of the personalized puzzle of our house when we get it completed so you can see what it looks like. That was a great gift idea!

I was also hoping to call the Croaks and wish them a Merry Christmas, but since I wasn't able to, I will do it now. I hope you had a great one!

Also, Merry Christmas to the Domers and Culls! We missed you guys but heard you had a good time at Carols house.

Last but not least, I want to thank Marjorie, Terry, Mom, Dad, Becky, Cora and Lorren. I don't know what Jason and I would have done without you here for us on Christmas. Things did not go how we had planned...we never even got the chance to make the Christmas dinner we planned, but we managed to have a great week with you visiting and your support got us through a very difficult couple of days. Jason and I are very lucky to have Team Jensen!!! We also loved all the wonderful presents you showered us with!

Jason got through his second radiation appointment today just fine. He has been sleeping most of the day. He is still on a lot of pain medicines which is probably why he is so sleepy. He did say the pain went down from an 8 to a 5 so that is a great start! Unfortunately, he will lose his vision permanently in his left eye and there is a risk of losing his eye itself as a side effect from the treatment, or they might have to surgically remove his eye and the tumor if the radiation doesn't work. Since the pain has decreased, I am thinking that the radiation must be working so I am very hopeful he will get to keep his beautiful left eye. I also had the Opthamologist do a thorough examination of his right eye and it is perfect. No sign of any metastasis so that is good news! Sorry for the very long blog and Merry Christmas!

Disco Penguin and "the bling" awards

Hi! Becky here, reporting from Houston (taking over blog duty for a few days to give Team Jensen a break)...

The Stradleys flew in last night and Terry flies in tonight at 10pm. Our Christmas party is almost complete. The Houston residence is full of beautiful decorations and Christmas treats. Today we have been hard at work decorating ornaments, watching movies and eating fudge, walnut logs and other delicious Christmas goodies. Packages for Team Jensen have been arriving daily and are much appreciated (although we are still anxiously awaiting Aunt Carol's cheese!).

Today - Jason won the award for adding the most bling to a Christmas ornament (adding bling is Debby terminology for the liberal use of glitter). His bejeweled and glittered Xmas present ornament beat out my disco penguin and Debby's Christmas Liberty Bell (complete with crack). I am including a photos of Debby and Jason in their Santa hats, Jason making his winning Christmas ornament and all of the rest of us hard at work preparing the house for Christmas.

Team Jensen would like to thank Aunt Patti, Uncle Dave and Cousin Christina for the anniversary puzzle of their home, the gift card, the walnut logs and the Hillary Clinton bobble-head. The new Secretary of State is now keeping watch on the mantle.

We wish everyone a merry Christmas! Continue keeping Team Jensen in your thoughts and prayers.

"I do whatever Jason tells me to do"

Jason's aunt and uncle, Cora and Lorren (Terry's brother and sister-in-law), got here yesterday - by train. They're making Christmas ornaments in the picture, as are the rest of us tonight. And we put Lorren to work in the kitchen, making a lentil soup. It was wonderful!
















We received a great gift yesterday - from Toni, one of my co-workers - see the pictures. It was so much fun to open - refrigerator magnets, button pins, the t-shirt, a pillow and a bumper sticker! The mug says "I do whatever Jason tells me to do". Jason immediately gave that one to Debby! And oh how true was the refrigerator magnet with Jason's To Do List - how did you know that Toni? Thanks so much!

Generous Friends and Family!

We have the most wonderful friends and family. Packages have been arriving all week and we have gotten the nicest gifts. We got a ton of these Livestrong mugs from Kristy which is perfect timing for when our families come to visit, because we weren't equipped with enough mugs. There are tall mugs with lids and fat shorter mugs that are great for morning coffee or tea. We absolutely love them!


We also got 2 care packages from family members. Jason's Aunt Carol send us our favorite potato chips from Ohio and we heard a rumor that some delicious cheese is on its way...we are so excited.

Jason's Aunt Kathy, Uncle Bob and cousin Raylene sent us a huge box filled with Christmas decorations, candy and ornaments. This is a picture of the beautiful wreath that Kathy made herself. MD Anderson had an auction of Christmas wreaths and we discussed purchasing one, but Kathy's wreath was much prettier than any of the ones we saw at the hospital. Our Christmas tree is now full of the cutest ornaments...and we now have some decorations to put up around the house. It now feels like Christmas at the Jensen Houston townhouse thanks to the Becerras!!! We even got two Santa hats that you can decorate. Jason and I will work on decorating them and will take a picture with them on once they are finished.

Marissa sent us an amazing manger scene to help us get in the Christmas spirit. The box was huge. We couldn't believe she had sent a whole manger scene! It came the day after the army men, so we were cracking up when we read the card and it said the army men were to protect Bethlehem since it can be a dangerous place.

This is the display I made for Jason's army men. The sign says "160 Million Spartans Unite!" This will be what Jason's T cells look like when they let them loose in his body to fight the cancer. The cancer doesn't have a chance!

And finally for Marissa's benefit, here is her vision of the army men protecting Bethlehem. We could only spare a few, the rest have to represent Jason's T cells.

Jason has his appetite back so we are hoping that he is gaining some weight back. He is still having a lot of trouble with his legs, mostly from pain and swelling. We have been taking multiple short walks each day and each time we try to go just a little bit further, but it has been pretty tiring for Jason to get around. Marjorie has been really busy shopping and getting everything ready for our visitors. I have been trying to help, but at the same time spend as much time as I can hanging out with Jason, since that is the most important part of my day. He thinks I run around too much, I guess I take after my dad a bit in not being able to sit still for too long. So I've been trying to sit back and just enjoy the day when I can....a good lesson for all of us during this busy and sometimes stressful time of year! The most important thing is just spending time with family!!!

Tuesday

Just a quick post -

Since Jason's still having problems with walking, Debby picked up a used wheelchair so he can get out of the house once in awhile.

We got out yesterday to see Quantum of Solace - we all liked it. We hope to get out tomorrow to pick out a small Christmas tree for our condo.

We're looking forward to having our families here with us over the holidays!

Toy Soldiers, Flying Monkeys, and Bugs

We've had some cold nights this week so we have been making good use of the fireplace. We thought after Jason's paracentesis, he would be lighter and have more energy and would be able to do a lot more walking. This didn't quite work out the way we hoped. Before and after the procedure, I had to hold off on giving him his Lovenox shot, which is a blood thinner to help his deep vein thrombosis (blood clots). Well, his left leg became huge and extremely painful the morning after the paracentesis. It turned purple from lack of circulation. I had to massage his feet to get the blood moving and put on a compression sock. He has been having to lie down most of the day with his leg raised up on 3 pillows. His leg was a little less swollen this morning so keeping it raised has been helping but he says it is still very painful. I talked to a nurse at the hospital and she said it will get better once the Lovenox kicks in again. We are still waiting...

This is a picture of a giant bug we saw on our window. The picture doesn't do him justice. He was at least 2 inches long and completely disgusting. See what you are missing by not living in Houston?

Marissa sent us 160 million Spartans, or rather, toy soldiers for Jason to play with and to be symbolic of our hope for the new treatment. Jason had fun organizing them and taking this picture.

Kristy sent us a box filled to the brim with christmas presents. We were naughty and opened it early. We got the full Stanley Kubrik collection of DVDs...awesome! We got 2 new puzzles and a puzzle roller so we can roll up the puzzle that we are working on and put it away. This will be really useful because we tend to take up the whole table with our puzzles and can't use it for anything else. Jason got 2 comfy pants to wear around the house. We got a variety pack of flavored teas (yummy, I'm becoming a tea addict). But the best and funniest thing we got was a whole slew of flying monkeys. These were to be placed around the house so Jason would find them one by one. Well, since he can't walk right now and I get him everything he needs, I decided to let him play with them all today...which he did. This picture is "post flight"...you should have seen the swarm of monkeys flying through the air. It was great! We can't wait for Kristy to come back and visit because she is going to have flying monkeys aimed at her at all hours of the day and night.

Marjorie and I went to Michaels to find some Christmas ornament making kits. I thought I'd put the family to work when they come out to visit to help us fill our tree with ornaments. I found the little pills that you put into warm water and they turn into spongy creatures. These are from the bug collection that I bought for Jason and I to play with. We are easilily entertained. We have been playing with shrinky dinks also. I don't know if anyone remembers those, but you can buy the paper at Michaels and they are a lot of fun!

Lighter and Whiter in Houston

Jason went in for the paracentesis today. Everything went well this time. He said it wasn't too bad. They took 2-1/2 liters of fluid from his abdomen. So hopefully he'll start feeling better and be able to eat more.


We have snow in Houston! We were on our way home from the hospital and what we thought was rain was actually snowflakes. We had found out that it doesn't snow in Houston very often – usually only about every 4 years – and the last time it snowed was 4 years ago.















We let Jason pick out this 1,000 piece puzzle at Toys R Us – he was the only one who thought it was easy.


Marjorie

The Spartans Are Back!

We had an appointment with Jason's oncologist, Dr. Kim on Monday and we were expecting to be admitted to the hospital for Jason's 4th course of biochemotherapy. Before his appointment, I called the TIL study research coordinator and found out some great news. Jason has 160 million T cells frozen and ready to be used to fight his cancer. Only 50% of melanoma patients successfully grow T cells, so we feel very fortunate that his grew and we are able to participate in this phase 2 clinical trial. We also know that although the biochemotherapy seemed to be helping with tumor stability, he has 3 new small subcutaneous lumps since his last checkup. So we discussed it with Dr. Kim and we all agreed that the biochemotherapy was not working as well as we had all hoped.

There is some preparation that needs to take place before Jason can start the TIL study. Mostly it has to be coordinated with insurance and he needs to be re-staged. This will include an MRI and more CT scans. The only exclusion criteria for this clinical trial is brain metastasis, so we have to pray that there are still no tumors in his brain. So far, we have been very lucky with that. After the re-staging, we should be all set to start this new treatment on December 29.

The treatment will consist of 7 days of chemotherapy to wipe out his immune system. Then they infuse the 160 million T cells. Then he has to undergo high dose IL2, as much as his body can tolerate. We are all a little apprehensive about the high dose IL2, including his doctor, since Jason had so many problems with it in the past. The T cells and IL2 should take an additional week if things go smoothly, so the total treatment should take 2 weeks in the hospital, 2 weeks of recovery, and the cycle will repeat once more if all goes well.

I am thinking that it won't be as bad as before. My hypothesis is that he was showing a lot of autoimmune-like symptoms before. This is because the IL2 ramped up his whole immune system and this probably lead to his immune system attacking his internal organs, ie. kidneys. (He is famous at the hospital for the kidney trouble he had and the fact that he was moments away from dialysis). The oncologists got together to discuss whether Jason should do this study or not. I think this treatment will go better because his immune system will be wiped out, so in theory, only the specific T cells should be ramped up and should attack the tumors and not his organs. Dr. Kim said this was all very experimental, but thought there could be some merit to what I think. He also said that right now, they don't even know if the IL2 is completely necessary for the T cells to work. Or it might only take one or two doses to get them going which I know Jason's body can handle.

So the Spartans are back!!! 160 million Spartans ready to attack! Tomorrow, we are going to attempt to get the paracentesis again (stomach draining). This will hopefully help Jason to eat more and gain some weight. Our main goal for the next couple weeks before the clinical trial starts is to get him as strong as possible and to get him back to a healthy weight. That way his body will be ready for everything that will be thrown his way. He is so strong willed and has endured so much already, so we know he will have no problem with this treatment and we are very optimistic. The TIL study is slated to be one of the most promising new cancer treatments being studied for melanoma and a variety of other cancers.

Mom and Dad's visit to Houston

Marjorie flew home to San Diego on Wednesday morning and my parents flew in Wednesday afternoon. We took them on a driving tour of Houston and showed them some of the really nice neighborhoods, and some of the not so nice areas of Houston. Jason made a really good crock pot pinto bean soup for dinner. Soup was great because it was a cold and rainy day. Then we watched Ironman and went to bed early because Jason had to be at the hospital early in the morning.

On Thursday, we first went to the diagnostic lab and Jason got his blood drawn. Then we dropped my parents off at the Houston Museum of Fine Art, since only one person could be in the room during Jason's paracentesis procedure (stomach draining). We didn't want my parents to be bored and stuck in the waiting room. Back at the hospital, we went to the Interventional Radiology department and got there an hour early, but luckily they took us back right away. We figured we would be in and out of there in no time. Boy were we wrong! They informed us that one of the blood tests wasn't done that morning. So they gave Jason a catheter in his arm... after many tries and 2 different nurses (he now has a huge bruise there). Then they pulled blood from it and sent it off to the lab. They told us the PT test would take an hour to be completed and then the doctor would do the procedure. We sat there for 3 hours while many patients came and went and we were just ignored. I kept asking our nurse about the test and he kept saying it wasn't done yet. Finally, I started complaining and he made some phone calls and found out Jason's blood was sent to the main building and the instrument needed to run the test was broken. So nice of them to tell us after we had waited there for 3 hours! They expected us to continue waiting. The doctor refused to do the procedure without having the test results. I told them no way. I made the nurse take out Jason's catheter and we took off. I told them that Jason has very few precious recovery days and we weren't going to spend one of them at the hospital waiting for blood work that might or might not ever get done. Especially when it was their fault that is wasn't ordered in the first place.

Jason and I were both in pretty sour moods. My parents had walked from the art museum back to the hospital and were waiting for us in the lobby. They suggested we go out and grab something to eat. We thought that was a good idea and would hopefully cheer us up. We decided to go to Chuy's. It is a Tex Mex restaurant that our landlord highly recommended. Lance Armstrong also spends almost a whole chapter in his book talking about how great it is. We agreed with both of them. We all really liked the food and the atmosphere was festive and cheerful. The burritos were huge. Jason could only eat half, but it was good enough to take the rest home.

When we got home, I wrote 3 letters of complaint and sent them off to various people at the hospital. That made me feel a little better. Then I argued a bit with insurance to get that out of the way. We took naps while Jason played Call of Duty on the xbox 360, and then we all played some Texas Hold'em and watched episodes from the first season of Saturday Night Live.

Today we had a leisurely morning and then took a day trip to Galveston. We saw the bay where the cruise terminal is located. We also saw a tall ship from 1877 called Elissa which was impressive. We bought a new puzzle to put together at the gift shop. Today was very cold, so most of our tour was spent inside the car. There is still a ton of hurricane damage on the island so we saw that, then had a nice lunch at a delicious deli located on the strand. They had amazing vegetarian chili and sandwiches made with really good bread.

This evening, I tortured everyone with Fred Claus (not recommended, even on blu-ray). Then me, Jason, and my dad played more Texas Hold'em on our iPhones while my mom read her mystery. We are not sure what we are going to do yet tomorrow. Unfortunately, we have to drop my parents off at the airport in the evening. They will be missed! But Sunday we get Marjorie back so that will be good! Jason has been feeling pretty good lately. Its a shame we have to go back into the hospital for more chemo on Monday. We'll try to post again before then. We miss everyone!

Houston Zoo

Yesterday we made a trip to the Houston Zoo. We thought it would be really small, because it is located in Hermann Park which we drive by all the time and it doesn't seem to be a very big park. We were surprised by the size of the zoo once inside. It was so large, that we didn't even see everything. We skipped the birds on purpose, but we also missed the african elephants, the wolves, the zebras, and the deer. Our favorite animals were the two grizzly bears and the tiger. One really sad statistic we read was that there are more tigers in the state of Texas than there are in the wild. That is pretty depressing. I also made us watch the monkeys for a long time because they are so amusing to me. The zoo was a lot of fun and it was nice to spend some time outside for a day.

Today was a sad day because we had to drop Terry off at the airport and we won't see him again until Christmas. We had a great weekend though and hopefully the time goes by fast until we see him again. On Wednesday, Marjorie is going home to San Diego and my parents are coming out to Houston for a few days. We are looking forward to them coming out and hopefully Jason will be feeling even better by then because he'll have more chance to recuperate. We're not sure what we will do when they come out yet, but we will keep everyone posted.

Gobble Gobble

Thanksgiving was delicious. Our menu consisted of:

turkey

tofurkey

green bean casserole

mashed potatoes with mushroom gravy

dinner rolls

stuffing

sweet potato casserole

cranberry sauce and relish

apple pie a la mode

pumpkin pie with cool whip

Amazingly, everything was vegetarian...except for Marjorie and Terry's turkey of course. For Andy's sake, I posted a picture of the turkey along with the tofurkey. The tofurkey is the one that is darker in color. It even comes with stuffing inside and a fake wishbone. We haven't gotten to the wishbone yet. It tasted really good and is much easier to cook than a real turkey. Jason wasn't able to eat a lot, but luckily he was able to taste a little bit of everything.

When we were planning our thanksgiving menu, we were trying to figure out how to do a vegetarian version of the sweet potato casserole. It requires marshmallows, but because marshmallows contain gelatin, Jason can't have them. So we looked for vegan marshmallows online, but the company that used to sell them went out of business. I found a recipe on how to make them. Instead of using gelatin, you use agar. Those of us in science are very familiar with agar, we use it on a daily basis to grow bacteria. I was able to purchase agar through amazon and Marjorie followed the vegan marshmallow recipe exactly. Well, our marshmallows never got firm enough. They tasted good, but never got to the proper consistency. We were debating if we should try the recipe again, but decided to check the internet for tips first. We were soon to find out that many people had tried this recipe and failed. One person tried 4 times and never could get it to work. So we gave up and ended up buying marshmallow creme. We used a few spoonfuls on top of the casserol and it came out great. It didn't get toasty like it does when you use real marshmallows, but it was still scrumptious. I think it was the best sweet potato casserole I have ever had! I'll have to have Marjorie post the recipe if anyone is interested.

Jason was just commenting on the names of stores in Houston and how ludicrous they are. There are 3 furniture stores with the worst names possible.

The Dump

Fingers

Conn's

Would anyone buy furniture at a store with one of these names? And the commercials come on all the time...they make us laugh.

Today we went to the hospital because Jason was scheduled to have another blood draw. We got there and the lab was closed. It looked like it had been closed all day long. Nice of them to tell us! Oh well, it got us out of the house for a while. The rest of the day has been spent watching Ninja Warrior on G4. Marjorie and I think its time to watch a chick flick after being exposed to man tv all day long.

The final picture I have posted is Jason in the new beanie that his mom made for him. She has been crocheting all week. The beanie looks so cute on him!

I'd like to thank everyone for their great ideas on what Jason should eat when nauseated. Keep sending those ideas, we will probably try them all. Also I wanted to thank the Beals for the Thanksgiving care package they sent. The popcorn and candy theme is perfect for us with all the movies we have been watching lately. Also, we have no Christmas decorations, so Ramona and Randy Reindeer are a great start. Thanks again!!

Sleepless in Houston

Well, yesterday turned out to be a little more eventful than we hoped for. Jason was pretty nauseous during the day. So we spent much of the day just trying to get him to eat and drink and keep his medicine down. So much for fancy and expensive anti-emetics, Jason was just as nauseated as usual even after all the new medications he was prescribed. We went to the hospital for blood work and came home planning on a nice relaxing night. As soon as we sat down to watch Heroes, I got a phone call from a nurse at the melanoma clinic and she said that Jason needed an emergency infusion of Magnesium because his levels were dangerously low. We went back to the hospital at 8 pm and the infusion took 4 hours. Jason and I didn't get home until 1:30 am. Then, I tried to get him to eat again because he had hardly eaten all day. After a small meal, we finally were able to get to sleep...at around 2:30 in the morning.

Today we luckily were able to sleep in until noon. We didn't even make it downstairs until 2:30 this afternoon...it takes a while to get Jason showered, iron both our clothes, and then get showered and dressed myself. So we were eating breakfast at 3. Our schedule got pretty screwed up. Jason still isn't eating really well. If anyone has ideas for foods to eat when feeling nauseated, I would love to hear them. I guess chemo changes your taste buds too, so some things that Jason used to like don't appeal to him anymore. He lost 17 pounds since his last treatment, so I am trying really hard so he will not lose any more weight. So if anyone you know went through chemo, please ask them what tasted good to them.

I hope everyone has a wonderful Thanksgiving! Terry is flying in tonight and we are all very excited to see him. We have all kinds of delicious foods we are going to make, so hopefully some of them will taste good to Jason. I can't wait to bite into our delicious tofurkey!

Happy Thanksgiving...we will miss not being with you!!!

Preparing for Tofurkey Day

As Terry mentioned yesterday, we escaped the hospital...barely. Jason was nauseated first thing in the morning when the nurse was in the room. She told the doctor that she didn't think Jason was ready to leave. Luckily, we had everyone already convinced that we were going to be leaving Sunday. When the nurse practitioner came in, Jason was seated in a chair with a smile on his face watching television. He had his game face on and it worked...we got our freedom! We also managed to aquire an increased and more effective dose of pain killers and new nausea medicine to try out during his recovery period to make it as enjoyable as possible.

Today was Tofurkey preparation day. Marjorie came home with an SUV full of groceries. Boy I hope Jason will have his appetite ready for Thursday! Jason spent most of the day asleep, but this is a good thing. We have both been sleep deprived for a week, so it is definitely nice to catch up on some ZZZZs. We also gave him a dose of Lasik to try to get some more of the water weight off. I'm not sure how effective it was. It works a lot better when given through IV at the hospital. They must be using a much larger dose. So for now we are letting Jason rest and trying to feed him mini meals all day long so as not to upset his stomach. Later this week, we will really focus on trying to help him get his strength back. He says he is feeling very weak and it is a battle for him to make it up the stairs each night.

Jason has a lot of distension (looks like beer belly but isn't) from the cancer in his liver. The full belly doesn't allow him to eat much at any one time. The doctor kept talking about tapping it off. He kept bringing it up everyday...he wants to tap Jason like a keg of beer. I guess this involves using ultrasound and a large needle to pull water from the ascites. This doesn't sound fun. The problem is, he will just fill right back up with water when he gets IV fluids during the next round of chemo. We might consider doing this procedure after he has finished his final dose of biochemotherapy because the results might last longer.

One interesting thing that happened yesterday when we were leaving the hospital is we ran into the nephrologist that treated Jason when he had kidney failure due to the high dose Interleukin treatment. He told us that because of Jason, they started a program at MD Anderson to study Interleukin and its affects on the kidneys. Hopefully someday they will be able to better protect patient's kidneys when giving this kind of therapy. It was cool that this was started because of their experience with Jason.

Well, that's all I have to write for tonight. We go into the hospital tomorrow for blood work and the rest of the day we will play by ear depending on how Jason is feeling. Marjorie and I might make a quick trip to Target to pick up some last minute Thanksgiving items. We miss everyone. And we are glad to be back at the townhouse!

Its Good to be "Home"

Jason came home today, a day earlier than they had expected. He is still very tired.

The internet is still down but they are supposed to come tomorrow and replace the modem. Debby will post when the link is back up.

Dad

Sleep's a Good Thing

Jason was really tired today but he did manage to get out and walk. Most of the day he just slept and slept and slept! Debby and I got a lot of reading done.

Jason was sleeping when an all too chipper physical therapist came in at 8:30 this morning and asked him if he was ready to do his exercises. He told her NO, and she turned around and left. I think he scared her away because she never came back.

All of the staff are talking about him going home on Monday. Jason said if we tell enough people he’s going home Sunday, they’ll start believing it!

Did You Get The Number On That Truck?

Since Jason's chemo is started in the evenings, he and Debby don't get much sleep and have found that usually the best time to sleep is from 8:00 - 11:00 AM. Except today they had visitors in and out all day long. Two different therapists came in. Pain management came in a couple times to discuss more effective medications.

He's feeling the chemo more now. He's more tired and finds it harder to walk. They told him the first two days he would feel like a Toyota truck hit him and the last two days he would feel like a Mac truck hit him. That's probably pretty accurate. So far he has weathered this round better than most of us thought he could. He is pushing himself to do what he can to help, such as going for walks at least two to three times each day.

They are trying out new anti nausea drugs because the ones he has been using at home were not working that well, and they told him that with the medications they have today he should not have any nausea. They also started him on Dopamine to help lose the water weight he has put on and he hopes to be out by Sunday.

Marjorie

Another Good Day

Jason's hemoglobin was low this morning at 8.5, but this afternoon it had gone up to 9.5. So at least for now he doesn't need a blood transfusion.

He's walking two to three times a day this time trying to keep his legs and body in condition to move.

Kristy, I made your Banana Nut Bread before Jason went into the hospital - delicious! It made enough that I'm bringing it in them this week, so they are still enjoying it. You spoiled Jason with your potato soup too. He likes your's better than the hospital's and the hospital usually has pretty good food.

We watched the movie "Amazing Grace" today. It was a good movie.

Marjorie

Second Day

Today went pretty well for Jason. He got in a couple walks and except for some nausea he felt pretty good. The drugs he gets for nausea while in the hospital are quite effective. He did have a bout with abdominal pain but the drugs they provided knocked it down fairly quickly.

He has a new doctor this week that he hasn't had before. This doctor is actually the head of the melanoma clinic.

A nutritionist came in who was very helpful in giving us ideas for foods to fight nausea and how to add protein to his diet. She was especially helpful because she is a vegetarian herself.

Debby brought in a candy jar she labeled "NURSE FUEL". Everybody loves it!

Terry for Marjorie again. Network problems at the condo.

The Bell Rings on Round Three

Our internet is down so the Team Jensen is posting tonight. Debby and Marjorie wrote the post, Marjorie dictated it to Terry who finally is posting it.

We saw Dr. Kim today. Jason’s test results came back with mixed responses. Regarding his blood work, the LDH (lactate dehydrogenase) improved tremendously. LDH is a blood marker representative for tumor load and stress on the body. It went from 8,005 on October 1, to 972 last Thursday. The normal level is 313 to 618. He’s close.

All the other blood work has also improved except for ALP (alkaline Phosphatase), which is a measure of liver disease. It was 530 and it is now at 1,204.

His MRI shows no cancer in the brain, which is excellent! It did show a slight increase in the tumor in his eye which was expected because Jason lost more of his vision since the last MRI. But we’re still hoping the next one will show a decrease in tumor size.

The CT scan came out with mixed results also. In the lungs the largest tumor shrunk but three smaller tumors increased slightly.

In the liver the largest tumor shrunk but there is still quite a bit of tumor load – a lot of small ones. We are hoping the smaller ones will follow suit. The spleen has been problematic. It has been a difficult organ and we are not happy with it. That tumor grew.

The kidneys and pancreas were clear and suspicious nodules (random subcutaneous bumps) on the CT scan are stable, and no new tumors have been found.

Also noted in the CT scan – he still has a blood clot in his pelvis, and they also found one in his left thigh, which we suspected, because he has had a lot of pain in his left leg.

The CT scan also noted increased ascites – increased fluid in the stomach, which is from the liver.

The plan is for Jason to have two more rounds of treatment then re-evaluate his progress. He has been admitted tonight for round three to the bio-chemo therapy. This is NOT what he was looking forward to, but we have high hopes for improving results.

Shawn, send Kristy back, and Carol, send cheese, because Jason has lost seventeen pounds. Jason said he is almost back to his high school weight.

Lake Houston State Park

Yesterday, we decided to take advantage of the last day of warm weather before a cold front is scheduled to hit Houston. We hit Blimpies to get sub sandwiches for picnicking, and headed 30 miles north to Lake Houston State Park. Lake Houston State Park is located near the city of New Caney and is comprised of almost 5000 acres of rivers, creeks, hiking/biking trails, equestrian trails, campgrounds, and a nature center. The land was bought by the state in 1980; they increased the size in 1990 when they bought even more land from the girl scouts. There used to be a huge girl scout camp there. So there are multiple lodges with many bunk beds for large groups to rent out.

Even though it is called Lake Houston, we didn't see a lake, nor do I think a Lake Houston even exists within the park. There is a lake called Lake Isabella but its a 4.5 mile hike to get there. A ranger told us there is even a resident alligator that lives in that lake. We picnicked in front of Peach Creek. The creek looked like a great place for kayaking. The current was strong so you wouldn't have to do a lot of paddling. Then we took a short walk to the nature center. The center was great. It had all kinds of poisonous snakes and turtles on display. It also had a stuffed mountain lion and coyote and some skeletons of other resident animals. The best display was the poop display. It taught you how to recognize animal droppings...I had to take a picture! The people that worked there were so nice. The nature center wasn't even open, but they saw Jason struggling to get there and they opened it up for us. They even gave us a ride back in a golf cart because we wore him out with all the walking.

It was a great day trip! The only downside was that when I went to get the car so we could load up our picnic gear, Jason fell trying to help Marjorie carry some stuff. She couldn't get him up by herself, so he had to stay on the ground until I came back. Between the two of us, we got him up and luckily he didn't hurt himself. Thank god there are two of us here for Jason! Another downside was mosquitoes. We did not bring any repellent and they were there in full force. At the nature center, they had a mosquito gauge and it was set at level 3 (moderate). I would hate to see that place at level 6 (war zone). You would get eaten alive. We are having a contest to see who has the most bites this morning. I think Marjorie is winning with 3. I only have one, but more might show up. Jason hasn't noticed any bites yet...he's keeping his fingers crossed.