A Day In The Life......

Friday, December 30, 2005

Starting IL2 today

Karl starts finally some time today. He called me this morning to say they will be moving him to the ICU and IL2 should start soon. It appears the oncologist on call finally gave him the green light. more to come

Thursday, December 29, 2005

A little good news...

Karl is still waiting for a bed in the ICU to start the IL2, the stand in oncologist came up and visited Karl last night and was all apologetic. Karl found out from the chemo nurses that this doctor has had several complaints and we were the straw that broke the camel's back. The case worker from the hospital was the VP of the Hospital. He is writing a formal letter to Texas Cancer Treatment Center about this doctor and I didn't get the details on what other actions the hospital is taking but I am sure we will hear more.

But the really good news, Karl's lumps that got taken off last Friday were benign! NO MELANOMA! YEAH! a late but great christmas wish comes true!

Still in Hospital Still no IL2

Well, now it's a disagreement between Karl's cardiologist who did a high tech sonogram and Karl's flow is at 45% versus the antiquated MUGA 37% flow that the horrible oncologist on call did. Karl's Cardiologist told him they don't do the MUGA because it's inaccurate and there is newer real time technology that lets the doctors look at the heart as well as measure the flow and other things. DUH! That's what's so insane about this...we asked and begged and demanded that the oncologist on call call Karl's Cardiologist Monday night- he wouldn't. I am reporting him to the Texas Medical Board and on top of it raising hell at the oncology center on monday with a meeting and several written complaints.
The other issue at hand is that the oncologist on call refuses treatment until Karl is up to 50% now. We were told by his regular oncologist 40-45% is fine. Karl's cardiologist said that NO Cancer patient on his watch has ever been 50% during treatment. So to appease the arrogant oncologist on call Karl is moved to the med surg floor of the hospital and is having some medication to help boost his flow. Karl's Cardiologist was extremely annoyed with the oncologist on call so this morning he's running another test to back up the sonogram. He also told Karl that the MUGA was done improperly and the results are not accurate so they might rerun that also.

he's in room 684 if you want to talk to him since he's twiddling his fingers for yet another day.

Tuesday, December 27, 2005

Still no treatment

Karl is sitting in the ICU waiting. Waiting because his heart test came back at 37% which the arrogant stand in Oncologist will not allow him to start treatment until his heart is at 45%. Cardiologist will be in tomorrow to check out things. SOO Karl might stay in and get his heart capacity back up or come home. We are both very disappointed because there is no uniform treatment method and too many cooks in the kitchen. Why wasn't this test done every time? Why would one doctor, his doctor clear him while the other won't budge? We were told it's imperative for him to have 6-9 days between treatments or they aren't worth doing. So he's now out 6-9 days. We were told 14 doses was the magic number but if his heart can't take it why aren't we doing less? We were told the melanoma lumps that were taken out recent was because the doses aren't close enough together. So what' the answer.

In the hospital with delays

Besides having a wonderful Christmas, our IL2 trip is not starting out well. Karl got to the hospital last night around 7pm only to find out our Oncologist had NOT written out the treatment orders for him. The oncologist on call demanded on some uneccessary tests to be run. I had it out with him in the hospital room- Karl and I both felt we were backed in a corner with no options by this doctor which was very frustrating. So Karl still hasn't gotten started on his IL2 as he has spent the morning having tests run. He called his cardiologist and the oncology center. We are trying to get this stopped so treatment can start soon. I HATE that doctors feel the need to CYA and this doctor has HORRIBLE bedside. Lovely.. he order a catheter for Karl on DAY1! what the fuck! The ICU nurses are smart enough not to do it, as they know Karl can do his urine collection without it. Thanks for making him even more uncomfortable!
My concern is that every hour he sits in there with nothing to do the more anxious he gets and thats not good.

Tuesday, December 20, 2005

Lumps of Melanoma for Christmas

Karl found another lump in his arm last Friday and then another cropped up yesterday. Oncologist of course wants them removed- again they are the size of peas, under the skin, hopefully a quick procedure. BUT it looks like the procedure will be this week and Karl will be going in for his next roundin the hospital on the 26th. Oncologist also thinks he needs to do the treatments of IL-2 closer together 2 rounds within 6-9 days and then a longer break. Oncologist is also not leading on to the seriousness of finding this lumps so frequently together, he wants scans done after this next round and then we will talk. The unknown is scary and Karl is doing a great job of staying posititive- he opted to go in next week and wants to be as aggressive as possible.

Monday, December 12, 2005

Karl is Home!

This pm Karl was let out of his hospital bed. He was so happy to get home and get the "hospital" smell off him. He's bloated like a balloon right now as a week of infusion -supporting fluids, lasiks(sp?) are ahead of him. His throat sores and mouth sores are tolerable but his toungue is swollen and he can barely talk.. he sounds like one does when they get their teeth worked on and one's mouth is numb. He skin is already flaking off everywhere and we have the anti itch and oatmeal baths ready. Nothing a good loofa can't get rid of. The troubling thing is from his last treatment his scratching wounds on his arms, feet and legs still haven't healed completely and he has to go to a dermatologist to get some steriods which he can't take until he's 7 days out from treatment.

Seeing Dr. Wyzinski, his oncologist tomorrow.. game plan is to get more scans to see what's going on and to plan our next attack.

Sunday, December 11, 2005

Going home on Monday

Karl's blood pressure dropped on Friday night and they had to stop his treatment. So he had his last dose on Sat morning. Today he's still completely out of it and hallucinating. His throat is really soar and he can barely talk or eat/drink. He's getting medication for it but is still very uncomfortable.

Talked to his oncologist about the new melanoma. Next week hopefully if insurance lets us, he will have scans to see what's going on. In light of the new growth, his oncologist wants to keep pushing the 14 doses. Next round could be as early as the 25th but we are hoping for Jan 2nd.

Saturday, December 10, 2005

Sat am last dose.

Well, the lump under his arm came back as a cyst with melanoma. We just can't seem to catch a break-at least it's out of his body.
Karl has the catheter and anal tube in and they have him drugged up on demerol for the last two days. He told me last night that he couldn't open his eyes because he was hallucinating too much. He's not in much pain, just very uncomfortable and sleeping all the time. Renal and Cardio docs say he looks good. Oncologist gave me the "we'll get it all, don't worry" speech. So hopefully he will be home on Monday. We have Anika's christmas concert next Thurs. No ideas on the next round but it could be as soon as the 26th. HO HO HO

Thursday, December 08, 2005

Thursday Update

Well, Karl is feeling more comfortable if you can call it that. They have him on around the clock demerol, benedryl and tylenol. It's helping. He had the lump under his arm removed pretty quickly today. Surgeon said it didn't look like melanoma, Oncologist is taking the "wait until the biopsy comes back" approach.

It looks like he is going to go for the 14 rounds this time. Karl is starting to develop the thrush again making it really hard to drink or eat anything. He's also starting to itch everywhere and we have the lotion for it. So far no catheter on either end, but Karl was feeling like he's losing control of his functions and wants it put in soon.

So it looks like he could be out on Sunday or Monday if he makes it to the 14 rounds. He's trying to stay positive and keep going.

Wednesday, December 07, 2005

Wednesday Update

Well, my mom's flight got cancelled this morning so she is hopefully going to by flying in tomorrow morning. Anika's school closed early today, 3:30 which didn't affect us, that's when she usually comes home.

Karl had a rough night, his nurse was not aware of his treatment, clueless, didn't wake him up to give him demerol, tylenol or anything. Karl woke up around 4am with major convulsing shakes, he said it took her forever to get in and then she didn't know what to do! He was really uncomfortable spiking 104. He talked to our oncologist this morning and he wrote orders for demerol and tylenol and benedryl around the clock- at specific times so this doesn't happen again. If she's on tonight, I am going to talk to her and make sure she gets it if not we will be asking for a new overnight nurse. He's still doing ok, 104 fever but the cooling blanket and fan seem to be helping him.

He has a lump under his right arm, it showed up around beginning of Nov. Surgeon and doctor don't think it's cancer, not on a lymph node. Surgeon thinks it's a cyst or infected gland. So Karl is going down to surgery tomorrow morning to have it cut out- quick local and take it out. Surgeon and Oncologist think he should be fine having the surgery during treatment.

Anyways, I am going to try to go in tonight depending on the road conditions.

Tuesday, December 06, 2005

Tuesday Update

Karl is doing ok. He is getting IL2 at 5pm, 1am and 9am. Looks like we are in for the full gamut-10-14 doses. I will post more once I see him this morning.

Update on Karl, he's starting the side effects as usual. 103-104 temp, chills and bloating. He's eating solids and liquids, mostly jello. They started using the cooling blanket this afternoon which gave him some relief. He's looking at the catheter being inserted soon as his urine production is down. The also put the leg massagers on him so he doesn't get edema.

I had a talk with his kidney specialist as he wanted to watch the demerol dosage. Laura our nurse and I convinced the kidney specialist that if he gets rid of it, Karl will have seizures and that wasn't a very nice thing to do to him every 8 hours. Doc agreed so at least we still have the demerol. What a sadist! what's next, a stick to bite down on?

I didn't see our Oncologist today, I missed him. Hopefully tomorrow. More updates tomorrow

Monday, December 05, 2005

Karl in the ICU

Well Karl went in around noon today. He's in room 290 this time. No clue on when the first dose is going to be administered. Probably around 5pm. On my way to get Anika for a visit.

For those who want to stop by and visit, there's a new way to get there because the ICU is in a newer part of the hospital. Park in the parking garage and go in the ER entrance. You follow the blue line past the ER desk. There will be a sign that says ICU. Turn right, go down 4 stairs and you will see elevators take it to the 2nd floor and you will find yourself in the ICU waiting room. Just come through the doors on the right.

Sunday, December 04, 2005

Back from the Vacation, on with the Treatment

We are back from the Disney cruise. As you can see from the photos, we all had a great time. Karl gained some weight back as he happily ate every couple of hours on the ship. Lots of pizza and brats along with a side of steak each night.


When we got home there was a message from the Oncologist, Karl is due in tomorrow around 9 or 10 am. I will send details when we get his room number etc. Looks like we are doing 10-14 rounds.