May, 2000 Diary Entries

05/07/00  Day +25 I know it's been a LONG time since anything has been added to the diary, and for that I am truly sorry!  Just as things went so fast when Greg was first admitted to the hospital and the transplant date neared, so too, was it WAY too hectic once he was released!  Yes, I said RELEASED!  Believe it or not, but Greg was released on Day +19 -- May 1, 2000!!!!!!!!!!!!!!!!  Just a week before, he was totally helpless and dependent on others for every basic necessity of life, and once those counts came up . . .   well,  . . . Greg being Greg, there was just no stopping things! 

So, to try and put things in the correct order of their happening, I will try to start somewhere around the time of the last diary entry, which was April 24.  Suffice it to say that things really sucked for a while there.  BUT, they do take a turn for the better!  I'll probably end up repeating myself a little, and backtracking somewhat, because I want to be able to put everything in here, but it's all a jumble right now, so please bear with me. 

On Monday, April 24, as Greg's mom and I were sitting there taking care of Greg, who walks in, but his brother, Gary!  What a shock that was!  You see, Gary first of all HATES hospitals!  Secondly, he does not, in any way, shape or form, like elevators.  Every other time Gary was at the hospital, he was with his wife.  Not that there's anything wrong with that.  It was just such a shock to see him, all alone!  After seeing how bad Greg was on Easter Sunday, he took off work early on Monday because, as he put it, he "just had to come down to see him."  That brought tears to my eyes, and still brings a lump to my throat.  I don't think Gary will ever realize how much that meant to me!  OK, I just read over the diary, and realize that You all know all this already!  I will try to get to the new stuff now Sorry!  By the way, did I mention that on Saturday, April 22, I had the carpet cleaners over to the house so I wasn't able to go to the hospital until later in the day.  Well, Greg was still having a pretty hard time, and I was really bumming because I had to be home for the carpet cleaners, and couldn't be at the hospital.  Well, I talked with Greg's mom, and it turns out that Jody couldn't bear to leave Greg alone in that shape, so she went to the hospital to sit with him until I could get there, because no one wanted him to be alone in that condition.  Once again, I've got lumps in my throat.  I just don't know how to say THANK YOU any more. 

OK, so on the 25th, you already know that Greg's NG tube was taken out.  On the 26th, Greg's basil morphine was lowered, and on the 27th, it was lowered again.  Because morphine is so addictive, and is a narcotic, a person has to be weaned off of it.  If it was just stopped cold turkey, there would be incredible withdrawals.  Greg was still able to use his "button" every 15 minutes to get an additional 1 mg of morphine for pain, but was not using it as much any more.  In fact, at one point, he asked for some pain medicine, and his mother handed him his "clicker" and he looked at it and said "what the hell is this?  I've never seen this before in my life."  Irene and I BUSTED out laughing!  That clicker was his BEST FRIEND for at least four days!  He hit that little bugger 88 times on Saturday night, and 66 times on Sunday!  Too funny!  I have to say, it really felt good to be able to laugh again.  Just knowing that Greg was doing better, and that his counts were up was a HUGE relief for all of us.  It's strange how the little things in life become so meaningful in times like these.  Just being able to laugh about something.  Well, I guess that tells you how grim things can get at times. 

On April 26 and 27, Greg is doing better and better, his counts are coming up VERY nicely, and on Friday, April 28th, the doctors start talking about him coming home the next week!  Holy cow!  I'm not ready for that!  I haven't gotten things straightened out at work, I haven't gotten the house cleaned, I haven't gotten all kinds of stuff done!  OHMYGOD!  So, I talk to my boss Friday morning -- she's in Mexico on vacation at the time, and try to warn her that it MAY be the next week that he comes home, but I'm hoping for Wednesday, which will give me time to get the house done.  Well, that works out fine as far as work goes, seeing as Monday is going to be hectic with it being her first day back and all.

On Saturday, April 29, I call Greg in the morning, as is my custom, and he tells me that he can COME HOME FOR A VISIT!  Again, Holy Cow!  I'M NOT READY FOR THIS!  Because I was shooting for Wednesday, I haven't gotten anything done -- besides that, this is only the day after I found out he'd be coming home in a couple days.  So, here it is Saturday morning, and I've got to find someone to watch the kids, get the van cleaned, and get my butt to the hospital ASAP because of course, he's got his undies in a bundle to get HOME for a while.  So, I drop the kids off at Don and Mary's house across the street (THANK YOU DON AND MARY), and run off to the car wash (no I'm not that silly, I had to get the INSIDE cleaned), get gas, and run off to the hospital to get Greg.  We get home and get Greg inside, and I run over and get the kids, and we have a very nice, actually quiet little reunion.  It had been over three weeks since the kids had seen their dad, and I had warned them over and over and over again about not jumping on him because of the Hickman, so it was quite subdued.  It was nice.  They were all very good, and after ten minutes wanted to know if they could "go outside and play."  Geez, doesn't that just sound like kids!  At least Greg knew his absence hadn't changed them in any way!  Greg had to be back at the hospital by 8:30 so he could be hooked up to the IV for some meds, and of course, Mary, our WONDERFUL neighbor, agreed to watch them again.  Thanks again, Mary!  Course, she spoils the kids, and has two of her own close to Aaron and Erica's age, so the kids practically live over there anyway!  I don't think it seemed any different from any other weekend for her!  <grins>  It was a huge help to be able to leave the kids there, because I think the reunion in the van would have been too difficult, and the kids were not allowed in the BMT unit of the hospital, and it would have been too long for them to wait in the van in the parking lot. 

So, on Sunday, April 30, the doctors decide that Greg can come home for a visit again, and can come home for good on Monday, May 1!  Holy Crap!  I'M REALLY NOT READY FOR THIS!  Once the NG tube came out, I figured Greg would have another two weeks or so in the hospital!  Here it is one week later, and he's ready to walk out the door!  Even though the doctors were talking "next week," I figured I still had some time!  WRONG.  Truth be told, it scared the crap out of me!  I didn't have the house ready for him to come home, I hadn't had the cleaning people in yet, I still had plants in the house, and I figured my boss wouldn't be happy that I wouldn't be there her first day back.  Well, I called the cleaning people and made an appointment for them to come on Tuesday (the doctors all said that one night wouldn't hurt Greg -- and it's not like the house was THAT dirty -- after all I do a pretty good cleaning job every week myself), I called my boss and told her that I wouldn't be in, and got my butt in gear for Monday morning. 

Monday morning, May 1 rolls around and I get up early to get the kiddos ready to go to school and to the sitter, pack up the last of the plants -- no easy task because the biggest one was upstairs, and is a MONSTER!  I wasn't smart enough to have Greg's brother or the neighbor carry it down for me on Sunday--DUH, so I ended up doing it myself, and trying to get that sucker in the van -- no easy task mind you, but then again, there was one very determined woman doing it.  So, I get the last of the plants (only 6 of them, mind you) in the van, Mary sees I'm still home and offers to drive Aaron to school (thanks, Mary), and I end up leaving a short time later with the girls for the sitter's house.  After that, it's off to my sister, Martha's house to drop off the last of the plants.  Martha is also the one who has taken over the care of Big Bird (a/k/a Joey, a/k/a Big Mouth), my parrot.  The doctors didn't think it was a good idea to have my parrot in the house for at least six months.  Martha offered to take him, and she's close enough that I can visit, and he won't feel I have abandoned him!  THANKS, MARTHA!  At this point, Joey is feeling truly at home, because Martha's house has turned into a JUNGLE with all the extra plants she has taken on!  I suppose I should thank Martha's husband, Kevin, too, because I do believe that he's not overly fond of Big Bird -- especially when he's screeching loud enough to be heard down the block and Kev's trying to sleep!  Martha's getting back at me, though, because she's spoiling the hell out of Big Bird, (gee, thanks) and he's going to be awfully irritated when he comes home and won't be out of his cage for ten hours a day because we're at work!  He's only allowed out when we're home -- for his own safety, as well as that of the dog's, who's terrified of him!! 

So, to continue, the plants are safely at Martha's, and I'm on my way to the hospital, finally, for the BIG DAY.  At this point, I am going to stop this entry.  It has gotten quite long, and as is par for the course, it has gotten quite late.  I need to get some sleep so that I can get up in the morning and get the kiddos off to school. I will try to write more again tomorrow night, but am not making any promises.  There's lots of work to be done around here, and the days just fly.  Rest assured that Greg is being well taken care of and is doing better than anyone anticipated, including his doctors!   Please continue your thoughts and prayers as they are obviously working, and are truly greatly appreciated!   

Love, peace, health and prayers,

Julie


05/08/00  Day +26 Well, hello everyone! I'm back.  After reading and listening to all the stories this past week since I've been home I think I'm once again ready to contribute to this adventure we call Bone Marrow Transplant! First and foremost, thank you's to my daily visitors while at the hospital. To you Julie my wife, Thank You! I myself along with our children, families, and friends truly witnessed what innerstrength, love, and drive to always be on top of things unfolded out of you and just did what had to be done to make sure everyone knew what was going on. You were and are truly something! Bill my friend, who came on a nightly basis, as we jokingly put it because he lived down the block and it got him out of the house! To my mother and sister Jody, who supplied daytime company and plenty of humor, Boy!, what a pair! Thank You! To my brother Gary and his wife, Julie, Thank You! Gary, Thanks for being there when I wasn't, I was very touched when told what you did, Thank You! Brother Tom, the Main Man! I've been thanking you for your help and being there seems like my whole adult life! Thank You! Bill's wife, Luanne, Thank You! Your huge candy bar posters were a hit with the nurses, who in turn divied up the munchies amongst themselves.  Chris Nelsen, my friend and neighbor, Thank You! It was nice of you to do the things you did! A major Blast from the Past, Steve Plumb, Thank you! It's like he came out of nowhere. Don and Vicki, Thank You! It was a nice lunch hour visit! Ron and Linda Thank You! To bring pictures of your trip along was a nice touch to the evening. To everyone else who was there in thought, and Prayers, Thank You! All the many visitors to the site, and E-Mail list Thank You! The Nurses and Doctors who watched me ever so closely and were always there, truly a Proffesional, Quality Team! #1 Top notch all the way, Thank You!!! To Julie's mother Joyce, and father John, Thank You for coming down from "Up-North" as we call it here in Wisconsin to be there for Julie and help with the children, and things around the house, and also John, thanks for stopping at the hospital. Finally to my Dad, Thanks for calling when you did, I know you love me! As I also love you! Whew! That was hard, I hope I didn't miss anyone, if so and as more comes back to me I will be sure to thank you all also. In the upcoming diaries, once again through my eyes and thoughts what happens after the Transplant. Please stay in touch, I'm seeing this as a most interesting time and yet another road in which to travel and learn about life through a new mind set! Once again, Thank You All! Love, Peace, and Prayers for us all.   Glad to be back!! Greg

05/09/00  Day +27 It's been 4 days since seeing the doctor on Friday and all is well Biologicaly, counts were so good last Friday that he said not to come in till one week from then, which would be this Friday. Went last night to watch my son, Aaron play his first baseball game of the season, wore a mask, alot of dust in the area, I have been walking 2-3 times daily at home but to no great distance as of yet. It seems like I can give it a go for 15-20 minutes then need the balance of the hour to rest and just relax, so I am being very careful as to how much I do. My body feels as if it has gone through a 15 round Championship Fight, my mind is O.K., that's up for debate, the Hickman bothers me, still don't like the thing hanging out of me. Eating is a big problem right now, all foods have no flavor and just seem to turn to paste once being chewed on, I found a bowl of Cream of Wheat to do the trick in the morning, then a high protien shake, followed by whatever I can stomach to eat at dinner with the family. Today, Tuesday, I'm in a funk it's been raining all day leaving me with not much to do so I'm kinda down, but hey! it's only the first day of no sunshine since I've gotton out of the hospital, how can I complain. So there you have it nothing glaring sticking out, just a bunch of little stuff that really amounts to nothing which I thank the Lord for. I think the only other thing that is not right yet is my ability to get a good night sleep. I can't seem to find the comfort zone, and the mind not wanting to shut off. So as I continue on my mending ways we will say farewell for today and hopefully have more good news tommorow. Thank you all for everything, each and everyone of you! Love, Peace, and Prayers for us all.   Greg

05/16/00  Day +34 It's been a week since I last wrote and sorry to say not much to report on. Things are very slow especially me. I'm weak and tired and am moving about very slowly, I find myself with a constant chill to the bone requiring me to stay dressed warm even in the house. Took a walk in the mall last Thursday, required a great effort, had to make several rest stops and really left me dragging the rest of the day. The weather here has been cool and rainy thus keeping me inside more than I would like to be, good news on the sleeping front, I now find myself getting good nights sleep. For a normal person I would say I am getting way too much, but then again I am not normal yet, 10 1/2 to 13 hours I have been averaging and I have to say it feels great, it's just a little bit harder to get out of bed after sleeping for such a period of time. Onto the consumption of foods and liquids, I find great delight in the fact that my dad has enjoyed keeping me supplied with his home made soups. He makes all his soups the old fashion way, and let me tell you these are the only things I can really stomach right now, I try daily in the evening when the children and my wife eat supper to have a little of what they are having and slow but sure I can taste just a little of what it is that they are eating. My appetite is starting to pick up, so I feed myself small portions at a time, Cream of Wheat, a power shake, a bowl of soup, and another bowl before I go to bed. I pretty much can not handle anymore food commercials on t.v. and wait for the day when I can sink my teeth into a Roasted Chicken, I guess I've seen more chicken commercials than any other red, white, or other meat including fish which I did have some on Friday to no luck as far as flavor was concerned. Last Friday we went to the hospital for blood work and follow-up, results are WBC down but not concerned at this time, all other counts good and holding steady. Liver function a little high and will be watched closely, sinus and deep lung congestion also being watched but as far as I'm concerned once again little things that don't amount to much in the large picture of what is going on. I am glad to see the hard work that Julie has put into the site has helped quite a few people already facing or going into BMT and our Prayers go out to all of those as their Prayers were directed our way during our time of need. As soon as Julie can tear herself away from all the chores she has been handling, we have more pictures to add to the site, so please watch for these and I myself will probably keep my diary logs to once a week unless something of importance pops up.  I thank you all again, for your thoughts, well wishes, and Prayers!  Love, Peace, and Prayers to all of you!   Greg