Happy Halloween

Time to start eating the candy. Not only have I lost the 30 pounds of fluid build up, but I drop an extra 10 pounds. Talk about yo-yo dieting.

Well at least I do not have to watch how much candy I have.

Happy Halloween

Recovering, happy halloween

Happy Halloween, I am starting to feel better. Here's our pumpkins that we carved today. A week to go for the next treatment.

Karl complications

Well Karl is still having a problem getting rid of the water in his body from the treatments and demerol- all 28 pounds of it so they have him on medication to help get the water out. Unfortunately he's on the toilet every 15-20 minutes. It's helping as he was having a hard time breathing and that seems to be better. He hasn't been able to get supporting fluids (he has enough in him for now) but has been getting his blood boosting -magnesium, potassium and others. He has scans this week and next week so hopefully before we go in for round 3 we will know how well the treatments are working to get rid of the melanoma. Even if they see all clear on the scans, Karl is having a couple more rounds of IL2 and the hospital.
He hasn't gotten his appetite back and I am juicing him as everything seems to taste like salt right now. His mouth/throat infection is cleared up and his skin isn't peeling so bad. We got him a loofa and lots of deep moisturizing lotions to help that! He's in pretty good spirits, just anxious to get better so he can enjoy the wonderful weather we are having with Anika. She's been doing a lot of riding her bike, soccer in the back yard, chalk drawing on the sidewalk etc.

Karl is Home!

Well, we thought he would be coming home late yesterday afternoon but his labs came back with low magnesium and potassium so he had to stay for a couple more hours for supporting fluids. He can talk, no problems with his voice this time, he still has thrush in his mouth but not as bad- He had a bake potato for dinner last night as we waited to leave. Other than some really scaly and peeling skin all over his body, he's in good spirits and mentioned something about checking his work email today ;-)
He slept ok last night, except for getting up and coughing up a lot of phlegm at 3am.

This week he's in the infusion center every day for 4-5 hrs of supporting fluids. We also have doctor's appointments and possibly scans before the next hospital stay which is slated for Nov. 7th.

Coming Home Tomorrow PM

Dr. Wyzinski stopped Karl,s treatment this morning at 1am due to his condition. Karl made it through 10 rounds of IL2. The average person does 8 to 10. So that's good, we were hoping for 12 but he's such a trooper. He's still not able keep anything down and has an bacterial infection in his throat and mouth (thrush) which is a side effect making it hard for him to eat or swallow anything. He's on antibiotics for it and some over the counter stuff. The itching is driving him nuts again and I spent most of today rubbing anti itch cream all over his arms, hands, legs and feet. His fluid retention is going down, he's not so bloated. No more fever or chills which is a bonus. He's resting pretty well, his blood levels are up and barring and bad labs or changes he should be cleared later tomorrow to come home.

Saturday Update

Well, Karl is the same:
Fever, shakes, bloating and constant uncomfortable oh and did I mention a lot of horrible smelling gas?.His bowels gave out this morning- lucky for me just when I go there. He made it to the toilet ok and it wasn't pure liquid. (sorry for the details). He was sleeping soundly about an hour later and I was busy involved with work when I hear "OH NO" He made me jump! and we got him on that toilet fast! Unfortunately they had to put the butt tube in, he's lost control of the muscles. Other than that, he's in and out of sleep and not eating but I am trying to get him to drink the protien supplement as much as he can.

103 And A Rough Night

Karl had a very rough night no thanks to the renal consult who we believe is a sadist. He STUPIDLY tried to take away the orders for demerol and ibuprofen. The nurses disagreed on the demerol and we are fighting about the ibuprofen. He's totally out of touch with his treatment and there is no reason for him not to get the pain and fever minimizers he needs. So last night when he spiked to 103 they couldn't give him any more tylenol because they needed it for the 1am IL2- so he had a cooling blanket put on him. Nice eh? He had a rough night last night and is sleeping this morning. Still no doctors in yet so hopefully I will be here to discuss the change. Sometimes I think it's a too many cooks in the kitchen kind of thing happening.

Friday Update

Update for the evening. Karl is faring ok, he hit 104.3 late this afternoon. He is leaking a little out of his veins, not too much to worry. He still can't keep food down but is taking liquid food supplements and they are staying in him so far. He just sleeping a lot and awake for short bursts to complain about being cold or hot, etc. The nurses all think he's sooo sweet and feel so horrible for him (he's being taking care of really well) Talked to the Chemo nurse, Dr Wyzinski ordered Karl to go to 12 doses which puts him home on Tues or Wed depending on how bad he gets. The next round is already scheduled and has a bed for Nov 7th .
Good news, I got clearance to be with Karl during non visiting hours today by Ken the administrator. Thank goodness! Mother is coming in tonight and Anika is off at her buddy Kylie's house this afternoon and tonight going to her other friend Michayla for her FIRST sleep over! So I am working at the hospital with client deadlines today and next week. At least I can be here with him all afternoon and this evening.
No more ibuprofen. Karl is stuck with the Tylenol and demerol only. He's having a hard time eating and is throwing up whatever he eats or drink. It seems to be coinciding with the shakes and then fever. They had to put a catheter in him today because he is BLOATED like a balloon and can't pee. Well, at least he made it two days without. He's hanging in there as much as possible, trying to make the best of it.
So far it's been 5 doses, if all goes well he'll be done with the treatments Sunday 1am if we do ten.

New Room, New Complications

Karl got moved to room 281. The large corner rooms nurse call button was not working properly and they couldn't get it fixed. He's in a smaller room with minimal windows and no private toilet, just a curtain.
We had another problem last night, Karl's blood pressure dropped to 80 over 50 YIKEs! They don't want it dropping lower than 90 or he might leak out his veins.
He was on oxygen most of the night but was back to normal this morning. Unfortunatelly they didn't give him the 1am dose of IL2. He did however get his dose this morning at 9am. I was able to talk to the Chemo Nurse some more. We also found out that the reason for his fluid retention last time and the unable to pee was due to all the demerol he was getting. So he has a choice, suffer through the violent shakes and teeth chattering and other side effects with minimal comfort or get a catheter and demerol. Karl decided to hold out as long as he can to use the demerol.
Dr. Wyzinski was also in and says he's doing 8 to 10 dosages IF we get this far. There are concerned about his blood pressure, it was back down this morning and they are hoping fluids will keep him steady rather than crossing over into drug management.
He was feeling ok this morning, ate breakfast and changed his clothes and brushed his teeth.
He had a renal/kidney consult and a cardio consult today. I had to leave when the renal consult came in due to visiting hours. This is just precautionary, as the side effects can cause permanent damage to his kidneys and anything with blood pressure the cardiologist has to be there.

Dr. Wyzinski called Dr. Figlin, the father of this protocol. Figlin recommends 8 to 10 doses and we might be doing more rounds as two hospital stays account for one round of treatment. After this stay HOPEFULLY we will be doing scans and it's up in the air if there will be another hospital stay before thanksgiving. But we will start up again in December with this going on for several months.

AI nika's Visit and Update

Anika got to visit today and she was excited to see Karl. Karl was happy to see her and talk about her wonderful day at school. He even got to help with her homework which we did there. It was also nice because she was in just before he got his first round of demerol, benedryl, zofran(nausea) and IL2. He will be out for a while thanks to the meds.

Unfortunately the nurse assistant Nazi that acts as the floor assistant/secretary came in and wanted Anika to leave because "children aren't allowed"
After the chemo and Karl's nurse Jill explained the "special" situation she left. We had a pleasant visit after that..until it was time to leave. Anika and I had to walk by her on the way out and I got interrogated on "who bent the rules for you" like she didn't believe me! The head nurse of the ICU and Chemo decided that it would be good for Karl. The I got yet another lecture on how this is not the norm. She was pissed because Anika went for a walk down to get ice with daddy and see Angela, our nurse from the last visit. I know she's doing her job really well and doesn't agree with the special nature of our situation. Karl is still the guinea pig for this ICU on chemo treatments but all I kept thinking was JEEZ get some sensitivity here. We sneak in via the service elevators, during NON visiting hours so others won't see her, she stays in the room with the curtain drawn and we try to keep her happy giggles to a minimum and visits to like 30 minutes...what more does she want from us! And you can't tell me that patients in there on end of life situations are allowed to have ALL their family in there to say goodbyes so I know they "bend" the rules.

It just left a really bad taste in my mouth that on top of everything else that I have to deal with up there I didn't need that today.

Enough about me, Karl's spirits are up and he's ready to go go go.
His phone in the room # 279 room phone 972-981-8225. Just ask for Karl Matthiessen.

Karl is in the ICU

Well, without delay at 11am this morning we got the call to come on in. Karl will get his first IL2 dose at 5pm today. They are doing it at 5pm, 1am and 12noon. The new ICU is really pretty and he has the corner suite, complete with a bathroom with shower! He has two walls of windows and a nice view. We watch movies this afternoon while he had his blood drawn, xrays and echocardiogram done.

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 left and a nurse can show you his room. I will add room number when I get a chance. I am off to bring Anika over to see him...the nurses were asking for her also!

Anticipating Tomorrow

Just got a call from Oncologist's office that Presby Plano ICU is full and so I don't know when I will be going in tomorrow IF tomorrow. They said that there should be some people leaving and beds opening, they just don't know when.

A Wonderful Weekend

Taking our therapist's advice, Karl tries to get out as much as physically possible before the hospital stay. Here's a shot from today at the Dallas arboretum where we go to get our pumpkins each fall. We took a lot of rests today but that help Karl with his appetite... he ate like a horse when we got home. It's was a wonderful family outing. Can't you just say, awww! to the picture?

Next Round Next Wednesday

Well, Karl starts another round next Wednesday. He has to have a stress test on his heart as a base line just in case he suffers any cardio damage. This time they will not be doing 14 rounds. Possibly 8-11 depending on how Karl is holding up. The plus side to this is Karl is feeling better so he can have a wonderful weekend with Anika and I before he has to "get sick" again. And there is a new ICU at Presby Plano so we can't wait to see it. He also lost 14 pounds in the two weeks he was in treatment. SOOO I am desperately trying to get that weight back on him in a healthy way so he won't be worse off after the next round. No scans yet, possibly in November before his third treatment.
Anika overheard us talking about the hospital and we had to fess up that daddy was going back in again. She got quiet and had a very sad and worried faced. When we asked her what was wrong she said she was afraid that Daddy would not come home- i.e. back to the death word. We explained to her that he was just going to get medicine to get rid of the Cancer and to feel better. She asked if she could visit and we said of course, she seemed better about it.

9 Days out

Had a pretty good weekend. My energy is starting to come back. A couple of more days of supporting fluids. I find out Wed. if I start the next round of IL2 next week.

This round will be a little less harsh. The Doctors decided that 14 rounds of IL2 is a little too overboard. They were surprised I made it through all 14 doses. The next round should be 11 doses. The hope is that I should be close to normal in a couple days.

I am ready to keep this going. I will beat this cancer.

Needs....

Dear Friends and Family:
Everyone has been so kind in offering support and doing things for us. I was watching the Today Show and they had a breast Cancer survivor on saying how important her friends and family played in recovery. She also cited a study that optimism and upbeat attitude plays in recovery. Seeing we are in the second battle with Karl's Cancer and you all want to help here's what I am asking you to do. Easy commitment- Every week either by mail, phone or email send Karl something to motivate him to fight this and stay optimistic. It could be a thought for the day, a personal message, a funny joke He's been really down lately and I am worried that because he's feeling so horribly he's not keeping his promise to live strong. I have so much to do to keep the family up and things running normal as can be around here that I sometimes forget to be his coach and tell him how great he's doing.
Below is one of the articles on optimism in research.
Thanks Everyone in advance!

PS Karl also says comfort foods from Chicago would also help.


CANCER SURVIVORS SAY AN UPBEAT OUTLOOK IS KEY TO SURVIVAL, BUT SCIENTIFIC EVIDENCE IS LACKING
When it comes to breast cancer, does a positive attitude help? Survivors seem to think so.
University of Toronto researchers, who recently published their results in Psycho-Oncology, interviewed 300 women who had been cancer-free for at least two years. They asked the women what they think caused the disease and what they've done to prevent its return. More than 40% of the women blamed stress for the disease's onset over scientifically linked factors such as genetics and environment. The study also showed 60% believe a positive attitude has kept them healthy.
"We were surprised," says lead researcher Donna Stewart, M.D., the women's health chair at the University Health Network. "We had no idea positive attitude was going to be as high as it turned out to be."

Home again

Well, I made it through 14 rounds of high dose IL2. I am still weak, but can feel my strength
slowly coming back. Thank you everyone for your prayers and support.

Today was the first day of support fluids which include antibiotics, hydration and a bunch of vitamins. I had a allergic reaction to the antibiotic. I wanted to peel my skin off. I develop hives all over. After 100ml of Bendadryl in IV form. I am still out of it tonight.

Infusion begins..

Karl is home and resting. He's still very tired and is sleeping, working & eating in that order. He also has to go in for the next seven days for supporting fluids at the cancer treatment center.

Today he had infusion & had an allergic reaction to the antibiotics- broke out in hives. So they had to rethink what to give him for antibiotics. He had a huge dose of benedryl this afternoon and is sleeping off the side effects. No news yet on the next treatment schedule.

Tuesday Karl is Coming Home

I got in this morning around 8:45and Karl was up and eating. He was very excited to be going home. He's really tired and has to go in for support fluids and blood work this week and next week.

More Monday Update

HI all! I was finally in to see Karl. He's off the tubes- yeah! No sign of coming home yet, I think he's being kept to gain strength and the morning tests will be the deciding factor each morning if he goes home. Anika had a great visit with him, she watched Clifford and Dragon tales- gave him lots of hugs and loves.
Karl was able to sit up in the couch and I was told he did some hall walking today which is a good sign. He doesn't have much of an appetite but we are working on it. The thrush and his throat is still pretty soar making it hard to each solids but he's trying his best. No more phosphates, just potassium right now and fluids because he is still trying to lose all the water he retained and also all his electrolytes are going out with it so they have to replenish. His legs are showing the signs of edema, all red and blotchy. He's itching from the fluids and rubbed the tops of his feet raw, so he's got socks and bandages on.
Mom said he ate a little bit of food today at lunch. I am hoping dinner will be better.


Well, I haven't been in yet to see Karl but I called and they are keeping him still in the ICU. He might get to come home tomorrow depending . Dr. Wyzinski wants him to stay to pump more phosphates and potassium in him. No word on another round of platelets for him. His swelling around his heart and lungs has gone down more but not completely normal. No word on the rest of his tests. He did supposedly eat breakfast this morning. I say supposedly because I haven't been able to gage if he's actually hungry or eating to get the tube out ;-) of his butt. See when his white cell count dropped, he cramped up and didn't feel like eating (we went through this before) nor did his stomach want food in it thus the tube.

Anika is going for a visit this afternoon after school because she misses him. Should be fun as he's a lot more talkative and able to read her stories etc.
Anyways, he's in high spirits and sounded disappointed that he wasn't going home today.

Sunday Not Going Home Anytime Soon

Well, Karl had to have platelets today. His white cell count was low and they don't want to take any chances. On top of it he has thrush which happens when you have chemo or IL2 type therapy. It's making it hard for him to eat, swallow and talk. He needs to keep as much nutrients in him as possible to help him get better. Thank goodness we have the juicer at home now and I can bring in stuff for him as well as what they are giving him in the hospital. The pulminologist also said he still has some swelling around his heart/lungs from the treatment. It hasn't gone down completely and he WILL be kept in the hospital - nothing out of the ordinary. He is perky old self and actually threw some ice at me today because I was too vigorous in giving him some to chew on and he got some down his gown.
No idea when he's coming home but I bet he will be in there all week which puts me in a bind if he gets out on next Sat. Mom is going home on Wed because she's got to be out in KC to visit brother Ben's family. So I am hoping he jumps back quicker than expected. Here's to hope!

He's sleeping a little better without much medication and is alert and talkative/responsive. After I saw him last night around 8pm he had improved immensely. They got him some throat lozenges for the thrush and to help numb the soreness. He was able to eat some apple sauce and enjoyed my beta carotene boost that I made in the juicer with carrots and peppers. He was able to talk a lot better and his breathing/coughing was at a minimum.
He is getting phosphates and potassium via IV now, they want to make sure he jumps back to normal levels.
He's in great spirits and just wants to get well so he can come home.

For those TX friends and neighbors, he's available for visitors and is "with it" again as they have taken him off the heavy medications.
Visiting 12-2pm or 4-6pm or 8-10pm 2nd floor Presby Plano.

On a freak out note, there was two code blues in the ICU today... two rooms down from Karl. When I left the family didn't look to happy and there was a lot of family there. It always makes me so sad.

Going Home Sunday???

Well there is a problem, Karl had a bronchial infection, he's doing nebulizers to get the pleghm up and I am not too sure he's coming home anytime soon. He can't talk very well, is still on the tubes and unable to eat solids yet. His white cell count plummeted and that means they will probably keep him in for a couple more days. Hopefully it will be before Wednesday--he might be staying in the ICU as the hospital is full.

I came back today on Sat. at 1pm to find that Karl had been given a catheter on top of his butt tube. It seems he had been unable to pee and it's been like more than the alloted time- he filled the bag with 800 cc of urine! OW! I hope he doesn't develop a bladder infection. He was still really out of it, sort of responsive to questions but unable to stay away. His fever is down to 100 and he's sleeping off the demerol. Every time he would see me he would say "Ready to go home, do we have everything?" and then try to take off his leads. So I decided to go home for an afternoon of cookie baking with Anika and my mom. I feel like if I am there right now he will want to speed things up and he really needs to rest and get better. Dr. Wyzinski hadn't been in yet to see him but I know he won't be going home because the other specialist ordered labs for Sunday morning meaning he won't be signing Karl out until those labs are done and back.

Saturday

Chest Xrays came back fine, they added some humidity to his oxygen and that has seemed to help immensely.
Well, Karl had another rough night complicated by bouts of diarrhea so much they put in an anal tube. He couldn't control it due to the demerol keeping him asleep and they couldn't keep changing the bedding on him every hour or half hour. He's still out of it and feeling the effects of the last treatment from midnight.

This is the fun (sarcasm) part of the week for me. He knows he's going home and is determined to get home as soon as possible which is fine we want him home. BUT because he still has demerol in his system he hallucinates and can't keep track of time/events. So this morning he already has tried to pull the tubes off his medi port and made a big old mess everywhere. Once we got that settled he pulled his blood pressure band and pulse detector off. I warned his nurse that he will be like this all day. They aren't going to restrain him unless he really tries to break free and run down the hall which he's never done.

One time last winter during ICU chemo he CALLED me at 1am persistently for me to pick up the phone. When I finally did he said "where are you? they are going to kick me out of the room and I don't have my clothes" I told him it was 1 am and he said no, it was 10am. I tried to reason with him and then got him to call the nurse. I found out the nurse had been in to check on him and told him he could probably go home in the morning. Sooo he got things all mixed up. ;-)
I am hoping he will get to come home tonight but with all the diarrhea who knows.

More later..