A Day In The Life......

Tuesday, January 31, 2006

Scan updates

Karl still hasn't had his PET scan, this week. We talked to Dr. Wyzinski and Karl is not doing IL-2 for another couple of weeks. Karl's CAT scan showed 3 small 3mm spots on his brain on his frontal lobe. If you go from your eyebrown up to your hairline, that's where they are. So Karl has to have them removed, we are seeing a surgeon on the 2nd and hoping this will happen next week. Karl is on steriods to keep the swelling down and he can't drive. Not so great for me. After surgery, he will have full brain radiation for three weeks. The we start IL2 again.
More details to come after we see the surgeon.

On the plus side, all the other spots of melanom except two on his trachea are gone. The trachea ones have not grown or shrunk so we are grateful for that. I was hoping he would be cancer free but not yet.

Monday, January 30, 2006

Karl still home waiting on PET

Well all scans are done except Karl's PET. He's having it this Friday. We see the Oncologist tomorrow to map out the rest of the game plan and when the next IL-2 hospital trip.
I found another pea size lump on Karl's back in his muscle close to the original site. So that will have to be dealt with, he's going to have it removed maybe while in the hospital again or before he goes in. The last three were benign so we are hoping this one will be the same.

Tuesday, January 24, 2006

Karl Home waiting on scans

Sorry to not have posted anything recently, Karl is home, telecommuting to work and having numerous doctor's visits. Please pray for him as he has scans tomorrow and Thursday. The PET scan hasn't been approved, but he will probably have it next week. They have to do a case after having the CAT to justify the PET. Depending on how his scans turn out will determine the rest of his treatment. He is slated for the next IL-2 round at Presby to happen some time in February. We won't know exact dates until he sees the Oncologist. If scans come back clear the next two doses will be "maintenance" and he will be done. If not, we keep going!

Letters of complaint about the doctor on call went to the center and Presby Plano. Waiting to see what will be done so far we have had a lot of apologies but no sign of action steps. We know that Presby Plano sent a letter of complaint about the doctor to the Oncology center and they are taking things "very seriously" whatever that means.

Karl is working on gaining weight as he's under 200 and we would like some weight back on him before the next round. He's going to the neurologist for possible sleep apnea issues- thank his mom & dad for that one as they smoked through his childhood raising his risk of this type of disorder. He also has to have some thyroid tests done as his levels were high- could have just been the IL-2 doing it but we have to make sure.

Sunday, January 08, 2006

Karl came home Friday afternoon

This is a picture prior to treatment when we were waiting around in the "suite" in the ICU- only room with a full bathroom and shower.

Sorry to not post this sooner but we had a busy day on Friday. There was some complications with Karl leaving on Friday. Karl was really upset and uncomfortable as the catheter and butt tube were still in and causing pain. He also wanted to come home and was very depressed and spent the morning in tears. Dr. Wyzinski called me around 11 am to say Karl was clear to go but when my mom got to the hospital the ICU nurses said no. Due to Karl's blood pressure dropping and not coming up quickly he had to get clearance from his cardiologist. So my mom came home, we called Dr. Wyzinski again and Karl was clear to go by 2pm. He's home, doing better. He has 20+ pounds of water in his body with no place to go and making it hard for him to sleep and breathe. His skin is peeling every place.. even not so nice places if you know what I mean. One of the ICU nurses recommended lotion from Wal-mart that's all natural and contains vitamin E. Really great stuff it's working well. His mouth sores are not as bad as last time- in anticipation we started him early on the miracle mouthwash and diflucan. So he's taking down soft foods and soup. He was hallucinating the first day home .. funny one for the books. To our surprise he walked out to the living room and asked for ant spray. After I got him to sit down (he wasn't suppose to be walking around without supervision) he said there were ants crawling all over the bed and mattress. For those in TX that could happen, especially in winter with a drought. So I ran in and checked the bed, mattress, under the featherbed etc. NOTHING. Total hallucination. Poor Anika was freaked out and I had to take her in and show her that there were no ants.

She's doing ok this round, has decided to be daddy's and mommy's helper. She brings daddy his juice, water and medicine in bed and tells him to "swish and swallow" his mouth medicine. She also helpled me put lotion on daddy the other night. She put half a jar of the vitamin E stuff on one leg and butt cheek. It was really funny at the time, Karl was so coated in lotion thanks to Anika! we all had a good laugh. Karl starts infusion tomorrow and we should know more this week. He will have his scans, MRI, Brain, Bone, PET, CAT and depending on how they turn out another 2 more visits to the ICU for IL-2 and we will be done or he will have more than 2 visits.
Probably next one will be in February some time.

Thursday, January 05, 2006

Recovering ok

The Jury is out wether Karl is coming home tomorrow or Sat. The nurses say tomorrow but he's still pretty medicated and his blood pressure dropped after the last dose again so he's working on that problem first. He must be feeling better because he's very uncomfortable right now and crabby. He started eating popiscles and icecream even though it hurts like hell, mouth sores and his tongue is swollen again. I also started juicing him with his favorite carrot and cucumber concoctions. More tomorrow.

14 Doses are over

Karl had his last dose of IL2 at 2am. I have not been in to see him yet today as he will still had the side effects for a couple of hours. I am going to go in tonight when the demerol has worn off and he's awake. We hope he will come home Sat. or Sun. depending on how he is feeling.

Tuesday, January 03, 2006

Starting again..Done Thursday am

Karl's blood pressure is back up and Dr. Wyzinski is back in the office. He came in to see Karl this afternoon and Karl got his 10th dose at 6pm and is going to 14 doses. Dr. Wyzinski apologized again for what Karl had to go through with the oncologist on call and that was about it. I wasn't there to see this but Karl related it to me later today. Anal tube going in tonight as he's lost control of his bowels completely. He's pretty much sleeping and in the demerol haze for the next day or two. He started hallucinating and pulled out his oxygen tube several times today. He did however eat some breakfast and lunch. We push the boost shakes and citrus drink as it has protien and energy to help him during the shakes.

Holding at 10 doses

Well Karl's blood pressure dropped and they gave him the night to recover. Guess why? the evil on call oncologist was not willing to start him up again so we ended up calling Karl's cardiologist who gave him the green light to continue after his pressure went to 90.On call oncologist pushed his decision until today when Karl's normal doctor is back. I also found out from the ICU nurses that they are mass writing the on call oncologist up to the hospital. HA! Karl is waiting and ready to get another dose, we are waiting for Dr. Wyzinski to get here and let him start up again. He had some breakfast and has been faring pretty well this round, catheter is in and we are close to getting the butt tube put in. He's not having a lot of edema this time around which is good. The only uncomfortable part is his skin, sores and major rashes everywhere that are uncomfortable, bleeding and itching thus the bleeding. 4 more to go! maybe he will be home on Friday.

Sunday, January 01, 2006

Half Way there

Well Karl is on dose 9 of 14 so he's over the half way mark. Nurse is putting in a catheter this afternoon as he's not peeing. No sign of a anal tube yet. Karl was able to have back to back motrin and tylenol this time so his fever is not so high, 102. That's making it a lot easier to get through the shakes and shivers. He even had an appetite today and had a chili baked potato and then went right to a peaceful sleep for a couple of hours. Also the on call oncologist switch to Dr. Perez who Karl really likes so this weekend has been pretty peaceful on the doctor side. More updates tomorrow.