March 20

Just wanted to let you know that Kerry is on the road to recuperation from the last Interlucken 2 treatment.  He has dropped 10 of the 28 pounds of water weight that he put on in the hospital and is sloughing skin like a snake going through the change of life. (Have you seen the ads on tv for a pet grooming device that vacuums the hair off of your pet?  I'm wondering if they would work for human skin.)  His appetite is slowly returning and it is easier for him to eat since he didn't get mouth sores after this round of treatment.  Most of his time is spent sleeping and trying to find movies on Netflix worth spending the time watching.  (We are open for suggestions for movies that can be streamed from Netflix).

Turns out that we may be among the last to hear about the flesh eating fish since several of you have told us of your personal knowledge of this oddity.  For the rest of you whose knowledge of new developments in the field of cosmetology is as minimal as ours, here is a photo and article about it. (Kerry specifically asked that this be posted here.)
http://www.telegraph.co.uk/health/healthnews/8833304/Health-risk-from-fish-pedicures.html



More in a few days, Maggie

March 16

Round 2, Day 5   Kerry's words of wisdom for the day:  Saliva is highly under rated.  If you don't think so, you don't know spit (or the side effects if his treatments).

Kerry has completed his treatments for the week. Low blood pressure continues to be a controlling factor for whether he gets a dose.  They are keeping his blood pressure artificially high (ie in the normal range) with neosynephrine -- checking his blood pressure every 15 minutes and adjusting the neosynephrine accordingly (try getting any sleep with that kind of attention). He got 7 out of 14 possible doses this week.   They say that 8 seems to be the average for the second week of treatment -- so I guess he did pretty well. When the doctor asked him how he felt about not getting any more doses this week, he responded "Relieved!".

As of this morning, Kerry had gained 20 pounds of water weight.  They had to cut his ID bracelet off because it got too tight. His eyes were pretty darned puffy too. Since most of the water weight settles with gravity, I can now confirm that he has a good butt.

Kerry will have 4-6 weeks off before they do a scan to see if the treatments are working. He will go home tomorrow or Sunday (when all of his labs are within the acceptable range) and be on the couch for the next week sleeping and shedding skin (another lovely side effect of the IL2).  One of the nurses suggested that we look into going to Viet Nam where they have fish that do pedicures.  Apparently, you put your feet in a pool with live fish that gently nibble the dead skin off of your feet.  Not sure how this would work with Kerry since every inch of his body is peeling -- but its worth looking into in our spare time.

March 14

Rouns 2 -- Day 3

Not much to report.  Kerry's blood pressure was too low to get 2 doses in a row today. He's had 5 doses out of a possible 7 so far this week.  They are giving him neosynephrine to keep his blood pressure up.  No other major symptoms except the very sunburned looking skin which is a bit itchy.  Today has mostly been napping between nurse visits.

More tomorrow.

March 13

Round 2, Day 2

To bring those of you we don't speak to regularly up to speed, Kerry was home for the last 2 weeks recuperating from his last round of Interluken 2.  By the end of the 2 weeks, he said he was feeling about 90-95% of normal (with the exception of having itchy skin).  He was even able to go to a bluegrass jam -- which I think for him is similar to a long session of meditation.  That 2 week respite ended yesterday when he started Round 2 of the Interluken 2 treatment.  This round will be another 5-6 days in the hospital.  He will have 14 possible infusions of IL2 (every 8 hours for 5 days -- just like last time.)  The nurses worn us that many patients don't get as many the second time because patients have a stronger reaction. So far he has had 4 infusions.

They say that the response is unpredictable from one week of Interluken 2 treatment to the next -- and that seems to be true for Kerry too.  This time Kerry started off with prickly skin and low blood pressure after the first bolus of IL2. So they are giving him IVs of saline and, if needed,  neosynephrine  to keep his blood pressure up. I kinda feel like he is a big cake for which they are trying to get all of the ingredients right -- but the way the ingredients react is unpredictable.  Anyway, nothing life threatening so far.  Also he hasn't had any of the bad chills or fevers yet.  Last night he thought he was having a weird reaction because his nose was getting really cold -- but it turned out that heat in his room had gone out temporarily and the temperature had dropped to 64 degrees (pretty cold when your wearing one of the open backed hospital gowns).


Seth came over to the hospital last night and watched a movie with Kerry. Another potential side effect of the medicine is that Kerry seems to be watching a lot of foreign kung-fu/chase type movies which have not previously been in his repertoire. No one warned us about that.  But we really have been appreciating the gift of  a few months of Netflix to get us through the long days in the hospital when Kerry is not napping or being prodded by a nurse.

March 6

Things are prgressing.  Kerry is feeling stronger by the day. He is now vertical as much as horizontal. His spirits seem good -- especially when friends and family are visiting.  His brother Sean is here for a couple of nights and is always a welcome guest. And his friend Dan came down from Seattle to visit yesterday. We are working diligently to put back on the pounds Kerry dropped during the last Interluken 2 treatment and with the generous amounts of food that keep coming in from our friends, that shouldn't be hard.  For all of you sending cards, music, art, books, Netflix, movies -- he is very touched and this show of support can't help but be healing.