A Day In The Life......

Friday, September 30, 2005

Friday Update

Well, Karl is pretty much sedated today. The last two days are always the worst as he is so uncomfortable from the side effects that it's better for him to sleep. Not too much hallucinating going on but a lot of moaning and wheezing. Dr. Wyzinski ordered a chest xray just in case he has fluid in his lungs or worse pneumonia. I'll know more later. He has been difficult to respond to take medications and eat. Getting the phosamax down took a lot of coaching as well as some water or fruit juice. So needless to say he's zonked for the day. Last treatment at midnight and barring any other complications he should be going home late tomorrow evening.

14 Doses is the Lucky Number

Well, Karl is ready to jump out of his skin...literally. He was very cranky today for the time he was awake because nothing seemed to give him any peace or comfort at ALL. Dr. Wyzinski came in at 5:00pm and Karl told him he felt like crap and nothing was helping. Plus I chimed in on the 105 fever and 103 during the day. So we got the demerol dosage upped and he can have ibuprofen also. So his fever shoots up now but drops down to 100 or so after the tylenol or ibuprofen kicks in- the demerol is also helping with the chills and shivering, it's not lasting as long or as bad. The bad part is he's not making much sense and is sleeping not so peacefully. I came back after dinner at 8pm and he had thrown up. Not sure why but he was fine and hadn't again when I left tonight. His levels are all fine expect for his phosphates which they are giving him phosmax every couple of hours to help that. He has developed a dry raspy cough from the oxygen drying out his sinuses that wakes him violently from sleep for a few minutes at a time.
Last dose will be at Midnight on Friday, we found out that he will be doing 14 doses- the average person can usually handle 8 to 11 doses of the Interluekin. He's just so healthy and his body is faring it so well that they are going for fourteen. Bummer for him because we thought the last one would be tonight... one more day.

Thursday, September 29, 2005

Thursday Update

Karl is VERY uncomfortable today. He's hallucinating a lot- the nurse said he was talking about Anika and day care. :-)We haven't been very successful in keeping his fever down below 100. So he's achey and just can't seem to get any rest. The worst for me is the moaning all the time and having to replace his oxygen (nose). His primary physician wants to put a mask on his but I don't know if that's going to help at all.
I am hoping he will be better by 3:30 when I bring Anika by for a visit, he seems to be calming down a bit.
The dietician came in to drop off some Ensure- WHATEVER this happens every friggen time, it's like the pharmaceutical reps have them on the payroll! His health is fine and all his initial labs came back really good. Plus Karl hates the stuff and we have better recommend nutritional supplements at home.
Anika's visit this afternoon was ok. His nurse gave him an early dose of demerol as he's getting more IL2 right now. He was sleepy, Anika was happy to see him but a little scared. We talked after and I told her that we woke him during nap and she doesn't like it when she gets woken up. She gave him a big hug and kiss and was off to home with Grammy. Karl is still pretty out of it and uncomfortable, Dr Wyzinski hasn't stopped in yet today so I don't know if he's going home tomorrow or Sat. I don't know if he's going to hold out for another day- very anxious to feel better and not be so icky. Plus he's starting to get grumpy about everything...

Thursday...Only one more day of this

Well, Karl still kept the 105 fever but thank goodness his kidneys, blood pressure and other important levels are all doing good. He has uncontrollable itching in his legs and arms. He actually pulled out his oxygen in his sleep last night! He had a rough night of high fevers and shakes but right now seems to be a little better and asked for breakfast which is good. They are just about to give him another dose of the IL-2 so he will be zapped for most of the morning because of the shakes, demerol and benedryl. Anika is going to sneak in again today to see daddy- she made him some pumpkins out of foam last night with our neighbors-family in TX Jay and Julie. I hope I can time it right so he's feeling a little better and can visit with her.

105 and hopefully not rising

Well, 8 out of a possible 14 doses of interleukin and Karl has hit the 105 degree mark today. This afternoon to be specific. He also has developed a cough-possible fluid in his lungs or it's the oxygen dry cough. The nurses are keeping an eye on it. About an hour after he gets the IL2 he has uncontrollable shakes and shivers that are very uncomfortable and his body temp goes up to 105. When I left him tonight he was down to the last dose of Tylenol (only allowed so many I think 400mg a day or his liver will stop working) . I was hoping he could float with the fan, cold packs and a 103 temp because he needs that Tylenol for the next dose of IL2 at midnight. There's not much else they can do but keep him cool and give him demerol or morphine. I will know how his night went tomorrow morning and will post an update, I am also going to find out exactly when he will be done with the dosage, he's down for 14 but they usually only get 11 in before the kidneys and blood pressure start to nose dive. I'm exhausted and have to get some sleep. My mom is coming in tonight to help with Anika and hospital rounds.

Wednesday, September 28, 2005

M is for Morphine

Update from Wednesday... He's on oxygen, a kidney monitor and they have air massagers on his legs to prevent blood clots. So far he's going through the cycle of high fever and shakes for 30-45 minutes. It takes a big toll on his body and he's exhausted after, sleeps for a couple of hours and then repeats the whole cycle. The morphine is making him talk in his sleep and moan-fun for me. He's not remembering it and will wake up for 10-15 m in at a time to talk and pee. They took another chest xray today to make sure his veins aren't leaking out. He's in good spirits and got a couple of calls from friends last night and today.
Well...here's the patient. He's doing ok except that darn fever won't go away and they can't give him too much tylenol or it will mess with his liver so we are on Morphine (not in this picture).
He's drinking lots of water, no liver problems yet and blood pressure is still good. He gets the next dose tonight at midnight. I will know in the morning how it went.

Tuesday, September 27, 2005

Anika's Visit

Well, we snuck Anika in between visiting hours today. She was very happy to see that daddy was ok and Nurse Karen let her help give him water and his medication. She also got to take his temperature. We picked out a balloon in the hosptial gift shop to bring him. She told me she was scared that daddy was going to die. So we explained to her and showed her the medicine he was getting and that being in the hospital will make him better. I am hoping that she's feeling better now that she got to see him.

Karl has started on the high fever cycle and Dr. Wyzinski has ordered demerol, benedryl and tylenol around the clock for him to keep the temperature down. So far his blood pressure is holding on and his kidney function is doing good. He's just very bloated and has a red/orange tint to his skin. He's floating in and out- but still has somewhat of an appetite. Pamela, Jacque and Bobby sent Frangos and I HAD to bring them to the hospital so he could nibble.
Previous ICU chemo treatments he lost his appetite right away and barely ate for the week.

Barring any blood pressure issues, he should be home on Friday.

Shaking out the Melanoma Day 2

Well, this morning Karl had his third dosage. The side effects have started, uncontrollable shakes/shivers, bone pain, high fever (103) and puffiness- he's all swollen and red. The nurse said his blood pressure has been strong so far, no signs of leaking. He was able to take a break this morning thanks to the morphine and eat some fruit, yogurt and cranberry juice. They are treating the symptoms as they happen. For him the worst is the chills and shaking. We joke that he's shaking out the melanoma. It's so bad initially before they get the morphine in him that he can't talk. For me the worst is the morphine hallucinations that he goes through- they are funny at the time but it's hard to see him so disoriented.
Karen, his outstanding nurse, pulled some strings and we are going to sneak Anika in this afternoon to see Karl. I was a little concerned as she told her montessori teacher that her daddy was going to die. So we think if she sees him, this will help- of course not when he's in the throws of the side effects. He generally sleeps in between and we are going at a time that he should be pretty calm.

The Figlin Regime

Well, Karl is undergoing an IL-2 (Interluekin) regime from Dr.Robert Figlin from UCLA. He's had great success with melanoma and prostate Cancer patients with this treatment.
here's a link to the site for more details http://http://www.proleukin.com/patient_resources/melanoma/met_mel.aspx

The United States Food and Drug Administration (FDA) has approved two therapies for patients with metastatic melanoma, PROLEUKIN® IL-2 and dacarbazine.
PROLEUKIN IL-2, an immunotherapy agent, is approved by the FDA as a first choice in treatment for appropriate patients with metastatic melanoma. In the
metastatic melanoma studies, objective responses were seen in 16% of patients. This included a 100% reduction of all tumor(s) in approximately 6% of patients and greater than 50% reduction in tumor(s) size in approximately 10% of patients. Unlike conventional therapies, immunotherapy drugs activate the body's own immune system to fight cancer. PROLEUKIN IL-2 gives patients a chance for a complete and long-lasting remission.

Monday, September 26, 2005

Monday and the Treatments Begin

Karl got admitted to Presby Plano this morning. What a great ICU! A lot roomier and better care than at RHD. Don't get me wrong, RHD is a nice hospital and we never worried about his level of care but Presby is a lot newer and they have more staff. He has a nurse, Karen, who is assigned to him and one other patient who will probably be gone before Karl's week is up. She is great! She even put him in the one of only two rooms with a real bathroom and door on the bathroom. The "corner suite". Also he can get flowers, balloons and lots of visitors. Unlike RHD where he was limited. Unfortunately Anika is still not allowed but she's been talking to daddy every afternoon. She's busy making a book for him as I am writing this.
For those who want to send wishes or visit, room phone 972-981-8225 he's in #6.
Visiting hours are 8-10am then 12-2 then 4-6 and 8-10. He's on the second floor in the ICU.http://www.phscare.org

We saw Dr. Wyzinski, his oncologist, who came in right before they started to dose him up with the Interleukin IL-2. They are going for the stronger protocol where Karl gets a "nuclear" size dose of IL-2 in a 15 minute time period every 8 hours. Dr. Wyzkinski and others warned us that his usually aches, fever and chills will probably be worse than ever. They are really worried about his blood pressure and kidneys. He had extra xrays and ultrasounds on his heart for before pictures just in case his blood pressuer goes in the toiles. Which means, Karl will probably be on Morphine for most of the week. All this for 3 silly lymph nodes! But the good part about this is no chemo throat and mouth burns after and no interferon. YEAH! Just two weeks to recoup and then the next round. Scans will happen after round two in the ICU and then potentially more rounds and radiation. He was starting to feel the effects when I left at 5pm, he told me to go home and come back at 8pm when he is really starting to feel bad. They also give him Benedryl which makes him really sleepy. More tomorrow.

Sunday, September 25, 2005

Anticipating Monday

Well, luckily Dr. Wyzkinski was able to pull strings and got Karl into Presbyterian of Plano's ICU for chemo. Last time we did chemo rounds they were still building the chemotherapy floor and didn't accept patients. Karl explained what a struggle it was for Celine to commute to RHD every day when he was in there. Presby Plano is 15 minutes in traffic from the house. We were so relieved. Plus it's a new hospital with lots of benefits (Anika was born there).
All set to start, the post birthday bash at Cru went well, fun was had by all. Karl is busy finishing up last minute Verizon work, loading his iPod and spent some of his bday money on movies for the week.
I've been researching alternative medicines to boost Karl's cancer fighting cells. I bought a juicer and I am hoping the extra nutrition will help Karl bounce back faster from chemotherapy. Supposedly broccoli is really good cancer fighter but Karl hates broccoli. I think I can disguide it in liquid form for him. I also got a barrage of stuff at Whole Foods that will boost his nutritional intake. You can never be to healthy!

Wednesday, September 21, 2005

What treatment will it be?

Well, chemo starts Monday but my oncologist hasn't told me which regime it will be. Right now I know I will be at RHD Medical Center in the ICU Monday the 26th thru that Friday. Then when I come home, I have a week of chemo and interleukin then two weeks off and we start the process again.

For all my VZ and TX friends who want to stop by the ICU, RHD link:http://http://www.rhdmemorial.com/CWSContent/rhdmemorial

Happy Birthday Karl!!!

Happy Birthday To Karl!
My Oncologist told me to have a great weekend before I go in for chemo on Monday. Since my birthday is tomorrow, we (Celine and I) decided to invite our friends in the area for celebratory drinks Saturday night at Cru.
8pm pictures to follow later.

The doctors report....

(Celine wrote this one)
Well, it's official: three sites of melanoma on Karl's lymph nodes on his trachea right where it splits to go to his lungs. The biopsy on Monday proved that it's melanoma. Dr. Wyzinski, his onlcologist assumes that the three nodes in his deep groin behind where they took out the previous lymph nodes also have melanoma.
Good news, he is still listed as responsive to treatments and we have several proven melanoma protocols to explore. The last one he was on was successful in erradicating the melanoma. So the doctors are discussing either using that protocol (Bethesda, MD) on a stronger dose or another more powerful protocol. They just don't want to kill a butterfly with a canon. So we are waiting to hear.
What does this mean? Still 3 rounds of continuous treatment in the ICU where Karl gets to be doped up on morphine to keep the convulsions, 103 fever and aches from happening. Karl says the worse for him is the catheter(yuck!).
Why the ICU? because of the potential side effects:
kidney failure & low blood pressure. Not a good thing. Other side effects he gets when he's done that week include extreme exhaustion, chemo throat burns that make it hard to eat or taste anything. His hands and feet peel from the chemo chemical burns. We joke that women pay lots of money for chemical peels and he gets them free!
Then he gets to do a week of chemo at the infusion center along with interferon shots. This is like have the worst flu ever for a week(fever, ache, pains). Two weeks off and we start the process again.
Intially, he will do three rounds of this, scans and then potentially radiation on the sites as they can't take out the lymph nodes due to their locations.

In the whole perspective of things again he still has several treatment options available, he's a fighter, and will be Cancer FREE AGAIN!