A Day In The Life......

Tuesday, February 28, 2006

Karl starts next treatment

We saw Dr. Wyzinski today and Karl is recovering ok from the surgeries. It looks like brain radiation will start next week. He is also going to do Temedor, Thalidomide and chemo for at least 6 months. He will start with 2 to 4 weeks of interferon injections- not as toxic as the infusions along with the Temedor and Thalidomide. He has some uncomfortable growths under his arm where we had two spots taken out back in Dec. We have to go in and get Dr. Beistch, his surgeon, to clean it out, they don't think it's cancer, just complications from removal of the two spots one that was melanoma and one that wasn't.
Other than having side effects from the antiseizure medicine making Karl tired, loopy and slurring like a drunk, things here are peaceful.

Wednesday, February 22, 2006

One more night...

Karl is staying over night one more night. The doctor wants to make sure his levels are all ok and blood test showed he didn't have enough anti seizure medicine in his system. Here's the other side. Looking yummy! Here's also a picture of the two patients. Anika felt good enough to have a visit and hung out to watch a movie with daddy in the room. Oh I forget, Anika didn't like that daddy's stitches on the first side were black. We jokingly told his Neurosurgeon that and the surgeon did this side in blue. Anika was there when the Neurosurgeon came for a checkup and he said to her "I heard you didn't like the color of your daddy's stitches so I put in blue" She took a good look at it and said "Didn't you have pink?" LOL!

Tuesday, February 21, 2006

Karl in Rm 507

Well it's been one HELL of a day. Karl finally got his brain scan at 5:45 tonight and was moved down to a patient room. His Neurosurgeon said he would be going home some time tomorrow.
On a side note, Anika injured her ankle at Little Gym class tonight and we ended up at the Urgent Care center. It could be a stress fracture, she's off it for 3-4 days and if she's not better we have to go to an orthopedic doctor to have a look at it. Since it's on her growth plate they don't want her moving around or walking on it. She has a pretty purple soft cast on it.
Can life get any more complicated here?

Monday, February 20, 2006

#2 Brain Surgery Went Great

Just got a call from the Neurosurgeon, Karl's surgery went fine. I am on my way to the hospital to check on him in ICU and I will write more later.
**Update. Karl is recovering really well, he's eating pudding and on morphine but not too much to talk and joke around. He was looking forward to watching the olympics tonight. He has an MRI tomorrow morning and barring any problems he will go down to a regular room some time tomorrow. He's in great spririts. We will let everyone know what room and I will post a picture of the right side tomorrow.

Wednesday, February 15, 2006

Karl is home

Late this afternoon Karl was given the clearance to come home. The nurses were really busy and he didn't get discharged until 7pm! Here's a more pleasant picture of him resting at home enjoying his get well gifts. 2 down and one more surgery for two more spots to go. They found another spot on the brain on the right side, the vector picked it up on Friday. Right side will be done on Monday, same time, same hospital, same surgeon.

Tuesday, February 14, 2006

In Room 608

Karl got moved to a room late afternoon and he's in a private room 608. His scan came back fine, no bleeding or swelling of his brain. It looks like they got it all. He's off morphine and on vicadin. He's getting up and walking and eating etc. He's looking forward to going home soon. The doctor said maybe some time tomorrow, I guess depending on how he's feeling and doing. His head bandage came off and here's what he looks like. It should go down to not so "Frankenstien" in a couple of months. His ear looks funky from the swelling. We kept saying, "knife fight".

Still in ICU waiting on MRI

Karl is looking good! Off the morphine and alert. The Physical Therapist came in to get him up and walking. He's feeling good enough to eat and have an opinion about the food. I brought him his iPod so Madonna won't be playing in his head anymore. No signs yet of any brain damage. Everything is functioning as normally as was prior to surgery. We have been waiting all day for the MRI. Once he has that, if it looks good-no major swelling or blood leaking, then he can be moved to a normal floor where Anika and I can go and visit.

Karl has requested a ful hair piece to cover his scars so everyone vote on which one you think would be good for him here's the link
I say go blonde and mullet:

Monday, February 13, 2006

Brain Surgery Went Well

Karl and I were up at 4:30 for surgery this morning. He didn't get into the preop until 6:30 and then proceeded to snore away. Karl was so stressed he broke out in HIVES! legs and arms the poor guy!
Surgery went successful. Dr. Tompkins took out the two lesions on the left side. He was done around 12:30 and spent a long time in recovery. I didn't get to see him in the ICU until around 3:30- I waited about 4 hrs in surgery waiting area with mom. He is doing great, but complaining about his head hurting- duh. A very strong "beat" and I asked him what song and he said torturously," I think it's Madonna". So he's on morphine for the pain but asking to eat and drink. Nurses won't let him have anything but crackers and apple juice until morning. If all goes well he will be moved down to a regular bed and hopefully home on Wednesday. I will keep everyone posted!

Sorry this took so long to post but we didn't expect this to take so long.

Wednesday, February 08, 2006

PET Results The Fight Goes on...

It is time for us all to stand and cheer for the doer, the achiever -- the one who recognizes the challenges and does something about it- Vince Lombardi
Aappropriatete quote for the week after the Super Bowl.

Well, the PET was not a ray of hope.
The good news: one node on his trachea is gone-the other two have shrank again! The neck, arm and some back potential melanoma hot spots are gone.
The other bad news: three spots on his left thigh, a swollen node near his kidney and some superficial spots on his back in his muscle or deep tissue.

Dr. Wyzinski is annoyed because the IL2 showed potential. Usually 9% of melanoma patients see good results and 1% get mixed. Karl is in the 1%. Dr. Wyzinski thinks that the IL2 was not as effective as they hoped, and Karl's heart took a beating (haha) on the last round, his LVEF (left ventricle ejection flow rate) is low. They don't want to cause permanent damage to his heart. So we are going back to the original treatment he had when he was first diagnosed with melanoma- which if you all remember killed the disease and kicked him in remission for 6 months. We were like "HURRAH" because:

1)Karl goes in to get the chemo at the center and can still work- he use to go into work after being infused in the morning. He also can work via computer during infusion so hurrah for VZ! His quality of life is better, he's able to do more and stay healthy.
2)It's a walk in the park compared to the IL2 and we know it works.Hehe was clean last time after 3 months.
3)My caregiver role is diminished so I can work more and do more with Anika and Karl.

So after the brain surgeries, Karl with start radiation and chemotherapy in March. He can do both together as the radiation is at the center and takes 10-15min to do. He will probably be taking Temedol via tablet at home along with 2 weeks of 5 days of infusion of chemotherapy drugs (DTIC), two weeks of supporting fluids and repeat the cycle. This will be done for at least 5 months. His side effects are manageable including fatigue, mouth sores and loss of appetite. We talked and feel that he's going to have a better time this round because we know what to expect and can manage his nutrition and health issues before they happen. The juicing works and we have a good idea what he likes and doesn't like when it comes to veggie juices! He is also walking every day to try to build up muscles and his stamina.

Oh also we are looking at clinical trials out there for melanoma and trying to get Karl on one locally or at MD Anderson.

Here's a link to one article on Temedol and it's effectiveness: http://www.looksmartcosmetic.com/p/articles/mi_m0PDG/is_1_2/ai_110152644

Thalidomide and temozolomide in the treatment of metastatic melanoma - Skin Cancer Foundation UpdateJournal of Drugs in Dermatology, Jan, 2003 by Wen-Jen Hwu
Melanoma is the third most common cancer to metastasize to the brain. Due to the extremely poor prognosis (median survival is often less than 6 months) and lack of effective therapy, patients are often excluded from clinical trials. However, melanoma is a highly vascularized tumor, suggesting a possible role for an antiangiogenic agent in combating metastasis. Thalidomide has been shown to possess antiangiogenic properties. Preliminary research indicates that the combination of thalidomide and temozolomide--an oral congener of dacarbazine (DTIC)--may offer improved therapy for advanced melanoma.

Tuesday, February 07, 2006

Brain Surgery Feb 13th

Well, Karl is scheduled for 7:30 am on Feb 13th and 20th for his surgeries. He has to be there at 5:30am UGH! That's going to be fun. Luckily mom is coming out for first surgery, we haven't booked tickets for second yet. His surgery will be at Plano Medical Center which is like 15 miles at the most from our house. Surgery could be anywhere from 2-4hrs long. Major risks are that he can bleed out from the melanoma causing pressure on his brain and thus a siezure. Other major risk is that his brain will swell too much and cause siezures. Thus he will be in the ICU for the first day and depending on how well he wakes up, will be down in a regular room on Tuesday. Hopefully coming home on Wed am to heal. The Neurosurgeon said he won't feel to good for the first couple of days but should be fine after that. He might have some short term memory loss- not remember things from the last couple of days. He will have a full head bandage on and we are coming up with all sorts of designs for it from Anika stickering it up to and "easter bonnet" for him. I know it sounds demented but humor is good medicine for Karl. Speaking of that for all of you that he told they were cutting completely around his skull and taking off the top of his skull- he was joking.

Sunday, February 05, 2006

Brain Surgery Update

No news on when the surgeries are taking place yet. We called the Neurosurgeon's office, they were having a problem with our insurance. Karl has a case worker at Cigna that we call anytime there is hang ups and he works "magic" so I am sure we will know Mon or Tues. Karl is taking steriods to keep the brain swelling down. He's fine, enjoying the new HDTV receivers we got, it makes watching TV a lot more cool. He's busy doing work and around the house stuff that I can't do without hiring a handyman or bribing my dad to come out to TX to do. So that's a plus.

Thursday, February 02, 2006

Brain Surgery

We met with the Neurosurgeon, Dr. Tompkins today. Of note, his practice is rated the top 20 in D Magazine and he checked out ok through our normal investigation.
Karl's lesions are operable. Thank GOD! Laser surgery will take the melanoma without taking part of his brain. Neurosurgeon sees no long term damage from the operation. The worst is Karl has a very very slight chance of speech problems after.
It looks like Karl will go through two operations. His lesions are on both sides of his temporal lobe. Two are on one side on the inside of one of his brain folds. They are going to have to move his brain to zap it but not remove part of the brain to get to it. Due to the stress his brain will undergo, he's going to have the other lesion taken out a week later. The Neurosurgeon does not want him to swell too much and have a siezure. So Karl will have two scars each half moon over his ears. Neurosurgeon says the scars will be very fine, not very noticeable once they heal.
Karl will go in and spend 2 days in the hospital to recover and then come home to heal the wound. He's going to be on antisiezure medicine for a couple of months. More details on when this is going to happen, we are waiting to hear when this all is going to happen but hoping it will be in a week. Karl is on steriods to stop any swelling that might happen.