Side effects wearing off

I woke up a couple times Monday night with a throbbing head, but each time it went away after a few minutes of getting up. I currently have an overall groggy feeling; I feel sluggish in both mind and body. At the current rate of improvement I think I'll start at the same baseline for week 2 of IL-2. One of the common side effects of this treatment is itching and rashes; I am not excluded from this. The nature of the rashes confuse me as they show up at random times in random places. I think my body still hasn't stabilized to what has been done to it. At this point the rashes are mostly a nuisance.

Morgan and Landon are nearly four now and Deb has been thinking awhile about getting them proper twin beds for their rooms, versus the convertible crib / day beds they are in now. I, of course, never think about these things, but then again most men don't. Since we both have a lot of free time (Deb is on summer break), we felt that this was a project we could tackle this week. Deb felt that a lot of the furniture could come from IKEA, so we loaded up the family in the SUV.

The twins romped around in the play area for an hour while Deb and I put together our item list. IKEA is one of those stores where you are a lot better off looking through their catalog before shopping, otherwise there is a sensory overload from all of the very inexpensive stuff (hmm... where could I put this cool $6 magnetic knife holder). Fortunately we had a pretty solid plan going in, so we were able to get IN to the checkout line in about an hour. Fortunately we were there on a Tuesday afternoon (which anyone who has shopped there on the weekend will understand). IKEA has appeal to both women and men for a couple reasons. Women like to visualize how different items in the store will enhance their home. Men like to solve the problem of getting all the boxes of stuff into (or onto) the car in a single trip. Tip for the women out there: let the man solve this problem on his own and thank him for it (even if it isn't in the most efficient manner), since success can partial offset the pain experienced in the wallet just minutes previous.

Later this evening Chuck and Missy will be visiting us from NC. In the meantime we have beds (and a dresser) from IKEA to assemble!

Free at Last

I had another difficult night, waking twice from intense migraine headaches. After settling myself and having Deb give me a gentle back rub, the throbbing in my head seemed to subside. I enjoyed a nice breakfast on our patio with Deb, as the weather was just about perfect. It may have just been a bowl of cereal but it felt like a bit of heaven to me.

By lunch time I was quite tired but fortunately none of the pain had returned. I hesitantly tried laying down on the couch and was relieved to find that there was no increase in head pain. I took a one hour nap while Deb sorted through some of our compiled mail from last week. The kids are returning home today with my parents, who will spend part of the evening with us. We'll share stories about the twins riding their new bikes and cheer on the Red Sox against the Angels on espnHD.

Thanks to everyone for their thoughts and prayers for my recovery from IL2 week 1. I really felt like Christ was right there at my side helping me through the headaches this morning. There is still a long road ahead for me on this treatment, but I feel to have turned onto a pleasant side street this morning.

BTW... Deb turns 30 today, so please give her a call or send her a note with birthday wishes.

Nate

Headaches...

Over the past 24 hours Nate has had severe headaches. When he lies down it gets worse so he spent most of the night propped up against the couch. Pain medication gave him a few hours of reprieve in the morning and in the evening but the pain never fully went away. He has also started itching mostly on his back and legs which makes it hard to sleep. He is feeling better otherwise and has been able to resume a normal diet. He did a little research online this afternoon and it turns out the water pill he is taking to get rid of the 10-15lbs of water weight he gained during the week is the probable cause of the headaches. Thankfully Monday morning will be the final water pill.

Good To Be Home

Yesterday afternoon Nate's temperature went up to 101.2 so the 3:00p.m. dose was skipped. This was more than fine with Nate since he had planned to ask to skip it anyway. He was given antibiotics and the fever went away by evening. He was also given some Demerol for the chills he felt coming on and that knocked him out for almost 4 hours. When our nurse woke him up at 5p.m. Nate was so convinced he had slept through the night that it took us a while to prove him otherwise. We had a good laugh about it after.

It was decided that Nate would not get the 11p.m. dose because of his worsening side effects. He had a restless night and I woke up at 4:30 a.m. to the sound of him watching t.v. He felt better in the morning and walked 10 laps around the floor. While walking he met and walked with another patient named Brian who is 23 and has had two remissions from brain cancer and is now having to go through treatments a third time. He was just married 12 weeks ago and lives in Grand Rapids. Please keep him in your prayers as well.

We were discharged at 1:00p.m. and it took me 5 loads to get all of the stuff we had accumulated throughout the week to our car in the parking garage. The gentleman working security stopped me after a while and gave me some free valet passes for our next stay.

It feels so good to be home! Nate is feeling tired and has on/off headaches but is in much better shape than yesterday. He is eating a little and drinking a lot. He is currently watching the Red Sox play the Yankees, which is a perfect distraction for him. He has seven prescriptions that he has to take during the next week. These will help him feel better and prepare him for Aug. 4th when he goes back for another week of doses. The kids are scheduled to return home from Nate's parents house sometime Sunday or possibly Monday.

10 doses complete - Week 1

The last day and a half have been much harder. Nate has extreme nausea 4 hours after each dose. He opted to skip the last two 11pm doses in order to have a better night sleep. Last night he didn't sleep well at all even with the skipped dose. Dr. Flaherty came in this morning and said that what he is going through is normal and that his vitals and blood work are all good. He said the last possible dose would be tonight at 11pm. Tomorrow would be for his recovery to return home in the afternoon. The good news is that Nate should bounce back quickly once off treatment.

Nate's mom brought the kids down from Port Huron for a visit around noon. Unfortunately Nate was at his worst and was only able to say Hi and I love you and just a few other things. The kids were wonderful and seemed to understand what was going on. We told them that Daddy was getting medicine that made him feel yucky and sleepy.

Yesterday we had two visitors; Caroline who is our neighbor and is recently in remission from ovarian cancer, and Josh who is a friend from church.

8 doses complete - Week 1

On Tuesday morning we had our first visitor, Felicity. She is a friend who actually works as a Doctor at Karmanos. It's amazing how much having someone visit lifts our spirits. Nate felt well enough in the afternoon to walk 5 laps around the floor and eat a light lunch and dinner. Karen and Carol, from my small group through Genesis, stopped by to visit. They brought us an additional blanket and pillow along with a Panera veggie sandwich that Nate and I shared. Nate started feeling the chills around 7pm and was given a dose of Demerol. We were told it would make him sleepy but would stop the chills immediately. They were right because he fell asleep for three hours waking briefly around 10pm and then slept through the night.

At 7am on Wednesday he was feeling nausea and was given some meds made him fall asleep for a few more hours. Nate's dad came at 11am to visit while I went to a professional development class for school in the afternoon. In my absence Nate walked one lap but spent most the time sleeping. In the evening we had four visitors- Mike, Eric, Donnell, and Tom who brought us some snacks from Trader Joe's along with a sub for Nate. We have found that we really enjoy the visits as they help to break up the day and energize Nate. After everyone left Nate began to feel nausea again so it was decided that he could skip his 11pm dose. Dr. Flaherty said that it hasn't proved more effective to get all of the doses so to skip a few is fine. Nate slept fairly well through the night and received his 8th dose in the morning. He was able to take a shower and do a little email and reading of the paper but only for a short time. At 11 a.m. he surprised me by getting up and walking two laps around the floor. He just needed to get up and stretch his legs.

If all goes as planned we will be headed back home Saturday afternoon for a week of recovery. Then on Monday Aug. 4 its back to Karmanos for a second week of treatments. Then its back home for another week or so of recovery and that will end round 1 of biotherapy. He will have 4-6 weeks before they will do a CT scan to check whether the IL2 is working.

The kids are staying the week up at Nate's parents (Gramodder and Papi as they call them) in Port Huron. For the second week they will be at our house and my mom will come in from Chicago to watch them. Thank you to those who have sent cards, emails, comments, and especially prayers. They mean so much to us.

Starting Biotherapy

Hi everyone, this is Deb. I will be helping update the blog while Nate is receiving treatment over the next few weeks. We checked into Karmanos yesterday so Nate could start receiving High Dose IL2. I found a great online video that gives every detail as to what that is however it is 27 min long so I'll also give you the basics.

High dose Interluken-2 (IL2)
This is a biological therapy not chemotherapy. Biological therapy treatments use your immune system to fight cancer while chemotherapy attacks the cancer cells directly.
Nate has to be in the hospital to receive the treatment because he receives a dose over a fifteen minute period every eight hours through an IV. 7a.m.-3p.m.-11p.m. is his schedule. Also he has to be very closely monitored for side effects which are numerous. He is weighed every morning because the drug almost shuts down his kidneys and he retains water. He could gain up to 4 lbs a day! They say he will lose it all within a couple of days of getting home by taking water pills. He has his vitals taken every two hours which makes for long nights. His blood is also drawn and checked daily. Most common side effects are general flu like symptoms, fatigue, restlessness, flushing and possibly itchy skin, diarrhea, swollen arms and legs, light sensitivity, chills/shakes, and loss of appetite. We were told most patients will get 8-12 doses with the max being 15. Doses are skipped if side effects are too severe.

We checked into Karmanos yesterday afternoon and Nate received his first IL-2 dose at 3p.m. He did great! We were told that most people get really bad chills and shakes soon after the first dose but Nate never got them. He started to feel aches all over a couple hours later along with some restlessness around 10p.m. but was able sleep most of the night. Dr. Flarhety came in at 8 this morning and was impressed as to how well Nate was handling the doses. The only concern was his blood pressure has been low so they will keep a close eye on that. Nate even felt well enough to eat a small breakfast. So far he has had 3 doses and is (as our nurse says) making this look easy.

We have been impressed with Karmanos so far. We were lucky enough to get a private room which is very large and has a nice feel to it. The nurses are wonderful especially Tania who was the first to sit down and go over everything with us. The floor is set up like a rectangle. The are often times patients lapping the halls during their stay (16 laps = 1 mile). We are in room 5219.

Deb

Father's Day

Dad, Mom, and my siblings joined us in Dearborn to celebrate Father's Day.

 

Disney - Part 1

 

 

 

 

Disney - Part 2