Halloween

Everyone got a kick out of our Halloween costumes today, especially Jason’s - he was a “prisoner” of MD Anderson. His black and white striped hat said “property of MD Anderson” and the back of his hat had his medical record number. And he had this giant chain that “chained him to the end of the bed . He had this new doctor all week who was always very serious, never smiled, and never said much of anything, and they wanted to see his face when he saw them. Well, he came in early (because they all want to get out of there on time on Fridays) and they weren’t ready – they quickly put on the costumes and they said he actually did laugh.

His nurse told everyone at the nurses’ station, “my patient dressed up and wait until you see him walk around!” She didn’t know there was no way Jason would have come out of him room in his costume – anyways, they got impatient waiting for him to come out and all of a sudden about 4 of them popped their heads in to see him.

Since this was the last day of chemo he was still pretty tired and slept most of the day, but he should perk up over the weekend. He also had a problem with itchiness and dry skin this time around. It looks like he doesn’t have as much fluid to get rid of this time around - the dopamine really helped in that department. He has done so much better this round that we’re hoping he’ll be able to get out of the hospital by Monday morning – 8 days instead of 11 days!

We did get to watch Nosferatu, a silent Dracula film from 1922 - interesting. (Brian, I stand corrected – I should have said the SNL’s from 30 years ago were fun to watch. But ‘interesting’ is the correct term for this one.) And I know they’re going to watch some scary Halloween movie tonight- they come alive when I’m ready for bed!

Marjorie

Day 4

Jason slept most of the day, but tomorrow we should have some good pictures. He's starting to retain the fluids he's getting with the chemo, but not as much as he did last round at this time, so we're hoping he'll do better.

They're happy with his blood work - kidneys look good and no anemia - and said he seems to have the upper hand over the bio-chemotherapy this time. Tonight is the last night he'll get the 5 chemo drugs, and tomorrow night he'll just get 2 of the drugs and that will be it for this round.

More tomorrow.

Marjorie

Day 3 - Over Halfway

Except for fatigue and some rashes, Jason's tolerating the chemo pretty well, so that's great. He has had some great nurses.

Debby has a pumpkin full of candy for the hospital staff this week and that has been a big hit.

Not much else to report right now. We watched several Saturday Night Live shows from the 70's today - interesting.

Marjorie

Day 2

Jason did pretty good today. He had a fever last night but it went away, not much nausea, and his appetite was okay. Of course he slept most of the day (because his medications make him sleepy and he can't sleep at night), but that's probably not a bad thing.

So far so good!

Marjorie

A Good Beginning

Today was a good beginning for Jason's next round of treatment. He said this is the best he has felt in a long time. He was able to walk to all his appointments - blood tests, x-rays, and doctor, which is a major improvement. He was admitted late this afternoon, and they'll start his chemo tonight.

Dr. Kim said today if this chemo treatment shrinks the tumor in his eye, he may get some of his eyesight back - wouldn't that be wonderful!

We have hopes he'll tolerate this week's treatment as well as the last time (except for the swelling).

Marjorie

Sunday Blues

You know that depressed feeling you get on Sundays because your weekend is over and you have a full work week ahead of you? Well, we are all feeling that today but Jason is feeling it ten times worse. He knows tomorrow he is being admitted to the hospital for his second round of biochemotherapy. Considering the first round took an 11 gruelling days, he is really dreading tomorrow and the anxiety is taking its toll. Neither of us slept very well last night and I have a feeling tonight will be worse. Here's to hoping that this round will go by much quicker and smoother.

On a brighter note, Marjorie is back. Hooray!! Jason needs two nurses, one is not enough! We also had a wonderful visit from my sister and Stephen. So that really helped us keep our minds off the coming week. We watched a lot of movies, went on a driving tour of Houston, and went Downtown for dinner. We also stopped at a Halloween store to get some costume ideas. Even though we are going to be stuck in the hospital, I am not going to let it ruin the holiday. Jason and I will be dressing up, eating candy and watching plenty of scary movies. Maybe we can even get Marjorie to dress up with us :-)

Here is a picture from the Halloween store...can anyone say Hillary 2012!!!

Posting to Post

Hello Again,

Not much to report today. As far as how I'm feeling its the same as yesterday. We picked up the kids at the airport in the afternoon, we had to make a quick stop at the hospital to pick up a couple prescriptions, we had lunch, went for a (short) walk, ordered Chinese for dinner and now Debby has them involved in a board game called Smart Ass (thanks again for that Mike).

We convinced my nurse to give me a Lasix in hops of getting more of this water off.

And that's about it, I see movies on TV in the near future and I know we all hope to get out of the house tomorrow........we'll see how it goes.

Jason

Bio Chemo Recovery

Hello Everyone,

Its been a while since I've last posted, and I'm, sorry, but this is the first I've felt good enough to sit behind a keyboard and talk. When they say "recovery period" they really mean it. It seems I'm taking longer than I anticipated to get back to even 80% this time.

I'm scheduled for a number of tests and a meeting with my doctor on Monday, then I'm to be admitted again for round 2 of Bio Chemo therapy. I don't think I'll be close to fully recovered from the 1st round come Monday and that kind of makes me nervous. A positive side is the Bio Chemo seems to agree with me more than the IL2 did. I still have the nausea, extreme fatigue, joint pain, and an addition of 30 pounds of water weight, but over all it went smoothly. I felt much better during the week Chemo that I did during the IL2. I still receive some IL2 but a much smaller dose so my body handles it better. My biggest problem during this recovery is the pain in my legs and other difficulties I'm having because of the leftover water weight I can't seem to shake off.

Debby's sister Becky and her husband Stephen are coming out tomorrow to visit over the weekend. It will be nice to have some company while I'm felling good enough to get around a bit. Hope they don't mind the movies because that's about the extent of my moving around. They just missed our latest storm, our county was on tornado watch which was interesting. I don't think I've ever seen so much lightning, plus a couple times it seemed to hit just right outside our windows.

That's all I have right now, I hope to post a couple more times before it's back to the Chemo.

Thanks again for all your kind words everyone,
Jason

Terry's visit

We had a great weekend. Jason was able to come "home" and Terry came out to visit. Jason got a bigger TV, 40" Toshiba plasma, as an early anniversary present from me and his parents. We will be celebrating our 4th wedding anniversary on November 6. There is a chance we might still be in the hospital while he recovers from his second round of chemo, so I wanted to be sure he got his present early so he could enjoy it during his recovery. Terry also bought a Blu-ray disc player which he kindly left here for us to use. The picture quality is amazing, especially combined with the new TV.

Jason still isn't able to walk very well, but we didn't want to spend all week sitting inside watching TV. So on Sunday we took a day trip to Galveston. We saw some of the massive damage caused by Ike. We also saw Moody Gardens which we would like to go back to when Jason is getting around better. It is a resort that has an aquarium inside a giant pyramid and a rainforest inside another giant pyramid. It definitely looks like a place worth checking out. Right next to it was Galveston's airport. It was so sad to see a whole lot of planes missing one wing, or both, or just having huge holes. The craziest thing we saw as we drove to Galveston was boats lying on the side of the freeway. There had to be at least 20 boats just lying next to the side of the road, completely far away from any source of water, and some of the boats were quite large. It really demonstrated the power of the storm surge and wind.















We have also been working on a puzzle for the last couple of weeks. It was only a 500 piece puzzle and should have been really easy, but it was 3D which made it much more difficult. The color of the puzzle pieces would change depending on how you held them, so it definitely made this puzzle a challenge. We took a picture to capture the fact that we did finally finish putting the puzzle together and now we are going to donate it to MD Anderson so other patients can enjoy the frustration of a 3D puzzle.
On a sad note, Jason's uncle Joe died over the weekend from a heart attack. Marjorie and Terry will be flying to Indiana for the funeral and from there driving to Ohio for the burial this week. Our deepest condolences to Sue, Karen, Ken, and Kevin as well as the rest of the family. Jason and I wish we could attend as well, but he just hasn't recovered enough to make the trip. We send you all our love and prayers.

Coming Home!

If all goes as planned, Jason will be coming "home" tomorrow - Thursday. The doctors must have been reading Nurse Debby's recovery plan from yesterday!

He has managed to lose quite a bit of water weight in the last couple days. The physical therapist got him out walking for the first time in 5 days - he was finally able to walk but was exhausted afterwards. He recuperated while watching the debate!

More later - once we're home!

Day 9 and stir crazy

Today is Jason's 9th day of being an inpatient at the hospital and he is going stir crazy. He can't walk because the swelling in his body is so bad, so he has been stuck in his room. When they finally take him off the dopamine (which is supporting his kidney function) we will at least be able to get him in a wheelchair and give him a change of scenery, but right now he is stuck in the melanoma ward. His doctor said he wouldn't be able to leave the hospital until his weight comes down and he can get around better on his own. The best way to do this would be to give him some diuretics, but they are so worried about his kidneys, they don't want to risk stressing them, and so he is only able to loose about 2 pounds a day of the 35 he has gained. This is not working for us.

I keep asking them to lower his IV fluids and give him diuretics and I keep getting the same answer...No. Today, they finally lowers his fluids quite a bit, but still no diuretics. I told them that Jason's dad is coming on Thursday and we would like to be home by then. They just laughed...not good. They said they would re-evaluate him again this afternoon. I will continue to pester them until I can get my husband out of the hospital...he is sick of being there and so am I. We are only 2 miles away and I don't see why he can't just loose the weight at the townhouse where he would be much more comfortable. We could both use a good night's sleep which neither of us has been able to get for the last 9 days. I will continue to fight for his freedom and hopefully by the next blog or so, he will be home.
Debby

Monday Update

A brief update –

Things are going pretty much the same – we’re still waiting for the swelling to go down so Jason can start walking. While on chemo he was given an ongoing anti-nausea medication. He’s not getting that anymore, so he’s more nauseated now that when he was on the chemo and therefore not eating much.

On a good note - They did start to reduce the amount of IV fluids he's still getting (to protect the kidneys). His creatinin has gone down a tenth of a point so if it stays down, they'll gradually continue to reduce the fluids.

The oncologists and ophthamalogists met this afternoon to discuss his treatment, so we hope to know more tomorrow.

Marjorie

Last Day of Round 3

Just a short update tonight –

Jason’s getting the last of his chemo tonight and very early in the morning, and that will be it for this round. Then he’ll have a couple days of recovery in the hospital before he can go home. He seems to have weathered the low level flu-like side effects that have continued throughout the 5 days of treatment. It looks like he got through this without the very serious and painful side effects he experienced with the first 2 treatments.

The biggest problem for Jason this round has been the fluid retention and the fatigue. He should start losing these fluids over the next couple days and continue to improve more during this two week recovery period.

More later.

Marjorie

Sleepy Jason

I'm just posting what Debby wrote tonight. The internet at the hospital wasn't working.

Jason spent most of today sleeping but with good reason. During the night the nurses come in almost every hour to administer one drug or another and when they aren't doing that, they are taking blood samples, vitals, or getting him up on the scale to weigh him. Neither of us are able to get a good night sleep so we both are doing a lot of napping during the day. He is also very anemic again..his hemoglobin dropped down to 7.6 which required a blood transfusion which he is currently receiving. On top of that, 1) he's got his shiny new morphine button, 2) one of the chemo drugs he is on causes drowsiness, and 3) his nausea medication contains Benadryl, so you can imagine how sleepy he is because of all these factors. In spite of this, he is doing pretty well today. He isn't getting many of the severe flu-like symtpoms that the high-dose IL2 treatment caused. This is probably because the dose of IL2 is much lower now and the nurses have been doing a great job staying on top of pain and adverse symptom management.

Once the anemia has improved, he should get a bit more energy back which will be great. He is also working with physical therapy to try to gain strength in his leg and improve his walking ability. We were worried this morning about his kidney function because his creatinine levels started to creep up again. The chemo drug Cisplatin can cause kidney impairment that does not improve when treatment stops which is a bit scary. He is being closely monitored and with the help of some dopamine and large amount of IV fluids, it looks like the kidneys are improving. Unfortunately he is getting very swollen from all of the fluids he is receiving which can be uncomfortable. (luckily he's got the morphine button for that)

All in all, this week has gone much better that we had predicted. It looks like he should be able to successfully complete the full 5 days of chemo. Unfortunately, during his two week recovery he has to start radiation in his left eye. At least this is an outpatient procedure but there are some risks involved and we were told that the wait time can be long in the radiation department, so we will still be spending quite a bit of time at the hospital. It will all be well worth it when the tumors start to shrink. We are all staying very positive and Jason has been showing amazing strength (when he is not asleep).

Debby

At the Push of a Button!

The chemo drugs didn't get to the floor until midnight last night, so Jason got a late start. When I came in this morning at 9:00 they had just given him dilaudin, a pretty strong pain killer, so he slept the rest of the morning. I should say he and Debby slept - since treatment didn't start until midnight, they didn't get much sleep.

He gets a combination of 5 drugs each day for 5 days, each given separately, spread out over a 24 hour period. They started his second dose tonight around 9:00.

They want to get him up and walking again but his leg is still swollen and too painful to walk on, so they've started to let him monitor his own pain medication - by the push of a button. It worked - he walked more tonight than he has in a long time. It was more tiring than painful, but that was a good change.

As the internet describes it, the side effects of interleukin are hell on earth, but so far this biochemotherapy treatment has gone pretty well. We hope this continues!

Marjorie

Day 1 - Again

Today was a long day. Jason's doctor didn't come in until 11:30 this morning. He said since major organs were involved, they wanted to get the biochemotherapy treatment started first, and then do radiation to the eye later.

But, because the CT scans showed colitis, inflammation of the colon, he wanted to call in a gastroenterologist. To make sure the colitis was taken care of before they started the biochemotherapy, the gastroenterologist was considering doing a colonoscopy, but would check with her team and get back to us. After consultation with them, tonight they decided not to do it. Because of his disease, there's a greater chance of perforation of the bowel which could delay treatment, so they recommended not going through with it. So while all this was pending, we spent the day playing Uno! (I wonder how much they charged us to do this?)

And we just got word that they're going to start the biochemotherapy treatment tonight. He's been on a liquid diet today in preparation for the colonoscopy, but at least tonight he'll get some real food before they start treatment.

We'll let you know more tomorrow how his first "day" of treatment went.

Marjorie

Picnic in Bell Park

Friday morning we saw the melanoma ophthmalogist. Jason has a large tumor in the back of his left eye. The doctor’s concerned about saving his eye and recommends having radiation in the eye soon – sooner than Dr. Kim wanted to do it. He will get together with Dr. Kim and they’ll decide if they’re going to start the biochemotherapy on Tuesday as scheduled (getting checked into the hospital on Monday) or if they’ll treat the eye first.


He’s still having a rough time. He can’t walk very well because of so much swelling in his one leg. We don’t know how long it will take Debby’s twice daily shots to start working in breaking up the blood clots.


He did want to get out today for a little bit, so we had a picnic in a little park close to Rice University. It was a beautiful day.





Someone else thought so too – a small wedding party arrived as we were leaving. We’re trying to make the most of this weekend before he goes in the hospital next week, so maybe we’ll try the zoo Sunday.


Marjorie

Pictures From Weekend Trip to SD

Here are the pictures from our visit home last weekend...

We got in late Thursday night. We were pretty tired, but we got to visit with Becky and Stephen...and we had balloons and chocolates waiting for us when we arrived which was really great.

On Friday, I had a doctor appt. in the morning. Zack and Deven brought us lunch (thanks again!) and then we had to rush off to Jason's emergency Opthamology appt., which took hours...so the day was pretty much a wash. We were exhausted by the time we got home and pretty upset after learning about the eye metastasis, so we just watched a little TV and crashed early.

On Saturday, Becky and Stephen went to Ryan Davies wedding. He is a friend of the family from way back. We used to play together when I was five and he was four. They said the wedding was great and took place at a beautiful venue in Temecula.

Jason and I took the opportunity of having an empty condo to invite a few friends over. We kept things pretty low key because Jason didn't have much energy. We still had a nice time...watched some football (go Fresno!) and caught up on some of our favorite TV shows (like Weeds) which we don't get in Houston...no pay channels :-(

On Sunday, we celebrated my Mom's birthday a week early. My Mom and Dad, and Terry and Marjorie came to the condo. We had a nice visit and ended up going to a Meditterranean restaurant down the street called Alladins. The food was great, the portions were huge...luckily, we all shared meals. After dinner, we came home and had cheesecake. It was a really nice day.

Monday morning we had to leave since we had a full week of doctor's appts ahead of us. Stephen took us to the airport and we sadly said goodbye to San Diego. We hope to be able to come home again soon. It was great to see everyone we had a chance to see...and hopefully we will have time...and Jason will have the energy to see more of you on our next trip back!

Longest Thursday Ever

This is going to be a quick blog update because it has been a really long and emotionally draining two days for all of us. Yesterday we spent all day at the hospital. First, Jason got a brain MRI, than blood work and chest x-rays, and finally a CT scan of the majority of Jason's torso. We didn't get home until 9:30 last night.

This morning we had an appt. with an Opthamologist at MD Anderson. I was impressed with their high tech equipment but not with their punctuality. Our appointment was at 9:30 and we didn't get out of there until 2:30. Most of the time was spent in the waiting room. They confirmed that Jason does have a large melanoma in the back of his left eye. He has lost most of the vision in that eye. His right eye is fine. The Opthamologist we saw today was not a melanoma specialist, so they ran all the tests today, but we have to go back tomorrow at 7:30 in the morning to see a specialist and find out the odds of getting the tumor to shrink using radiation and possibly getting more of his eyesight back.

Next, we had an appt. with Dr. Kim, Jason's oncologist. The news was not good. Jason's brain is still clear (thankfully), but the disease has progressed in the rest of his body. The tumors have grown in size in his liver and lungs, and he has developed new lesions subcutaneously and in his spleen. Also his LDH levels were quite high which means his body is being stressed by the tumor load. So this means that the IL2 treatment has not worked. I also debated with the doctor about whether Jason's melanoma was ocular (originating from his eye) or cutaneous (originating from the skin). He won me over with his argument for thinking it is cutaneous. Even though it is very rare for melanoma to go from the skin to the eye, he has seen it happen before. Also, he hasn't seen ocular melanoma metastasize subcutaneously, and I had to agree with him about that from the research that I have done. And statistically, cutaneous melanoma is much more common than ocular. The treatments for these 2 types of melanoma are quite different, so I wanted to be reasonably sure we were choosing the correct treatment to try next.

The doctor convinced us that we need to be much more aggressive. Jason is going to start biochemotherapy on Monday. This is a combination of IL2, Interpheron alpha, and 3 kinds of chemo drugs. I will elaborate more on this therapy later...for now just say it will be no picnic for Jason. We are still waiting to hear about Jason's T-cells from the TIL study. If we can get tumor shrinkage from biochemotherapy, than Jason will hopefully be strong enough to handle IL2 therapy again, and it can be combined with his cloned T cells if they have grown successfully.

Finally, we found out that Jason has multiple blood clots, which is the reason why he has been in tremendous pain with swollen legs and a swollen right arm, and he hasn't been able to walk for the past week. I will be giving him injections twice a day with a blood clotting medication for the next 30 days. Hopefully he will still love me just as much after I stick a needle in him twice a day. The best part is that each injection cost $100 and our insurance company only wants to pay for 10 of them, and we need 60. You gotta love medical insurance! They are really good about not paying for medications that cancer patients need to survive. I won't even get into that rant right now.

On a brighter note, after our early morning appt. tomorrow, we get a couple days of rest. We are all trying to stay positive and we know that Jason is strong and will make it through the next round of treatments. We had a wonderful time in San Diego. It was great to be home and it was great to see everyone. I will post some pictures from the SD trip sometime this weekend when I have more energy. For now, we want to send everyone our love and please keep Jason in your thoughts/prayers. He is tired and needs a few days of recuperation, but he seems to be taking things well enough.