April, 2000 Diary Entries

4/7/00 OK, OK, OK,!  I know I haven't been here lately, but, I'm now at Froedtert Memorial Hospital with a view at the top, eighth floor, that is.  The room is small but the view out the window makes up for the size of the room.  We got here at 8 a.m. on Thursday, and sure enough, what's the first question they ask?  "We need to get some  blood from you, Greg."  Surely this made me realize we were at the right place.  The Hickman catheter procedure went fine, and once again was very interesting as to how they insert such a gizmo into a main artery.  After the doctor explained the procedure, I told him I had a very uneasy feeling about the procedure and was hoping the right kind of mind easers would be put to use.  His reply was "that's up to the girls," so with that said, I proceeded to explain to the girls and their response was "Do you want drugs?"  So, by golly, they took care of me!  I asked them what they were giving me and I'll be damned if I can remember!  The procedure itself is very interesting.  They lay you flat on your back, tie you down, the drugs were administered as needed and worked just great.  They bring a large camera over the chest and shoulder area to allow the doctor to follow the proper route on a monitor which was not alone, but had 5 others with it on a large support arm.  As we prepared to start, they made a tent like shape over my face for everyone's protection, and the following words were spoken:  "you're going to feel a few pokes and some stinging, this is just to freeze the area where the insertion will be made."  At this time, I asked the nurses if the mind easers were working, and they said yes, but we can give you more.  I replied "please, that would be nice."  The next step was the insertion of the catheter.  This turned out to be quite a struggle, or so I thought.  By watching the catheter on the monitor the doctor seamed his way through to his final destination, a major artery to the heart.  There was no pain to speak of, on the cloud that I was on, but he was using a lot of pressure and I could tell this was no easy task.  After he was finished, I joked with the doctor, saying to him as I listened while he was at work that I didn't hear "OH SHIT!", or "UH, OH," or "OOOOOOOOOOPS!"  I then thanked him for a job well done and that I felt much more at ease now.  Chest x-rays were next on the agenda, and then back to my room where Julie was putting the final touches on the laptop. 

I started chemo at 8:00 p.m. Thursday night.  The mixture is Ara-C and Cisplatin and will continue until Sunday.  Monday begins the TBI (total body irradiation). 

I must mention that we are having one of those April winter blizzards right now.  This one looks pretty bad, but after all is said and done, will be melted in a few days.  Poor Julie.  It's a long drive to begin with (45 miles), and to throw a blizzard at her, I don't think that's what she needs right now. 

Well, that's about it for now.  it's only been 2 days and I know as the days go much more will come to the front.  Did I mention the freedom that is allowed for the patient, as long as you stay in the BMT ward, everything is open to you.  They have a refrigerator and freezer filled with goodies, ice machine and microwave.  In another room is a lounge area for patients and visitors.  This room features two TVs, one for adult viewing and the other for children who want to play Nintendo.  What's that???  There is a huge video library, along with plenty of reading material, board games, puzzles, a piano, a dart board, a computer (without internet access) and there is always hot coffee available.  Walking the ward doesn't take long only 2-3 minutes, depending on speed and traffic.  Exercise bikes are available, and I have one coming to my room tomorrow.  Bottom line:  so far so good!  Love, Peace and Prayers to you all!  Greg

04-10-00   The days are going quickly, my gosh it's Monday morning already, chemo is done and Total Body Radiation starts at 6:3O a.m. The first visit of three per day I am told is the longest due to the sizing up of the protective lead blocks that cover the lungs, kidneys and other vital organs in this area. There are 2 five minute sessions, one frontal, while standing, and also one turned around for your back area, the plates are put on a rope which is then pulled and adjusted to fit accordingly, please go to picture site on radiation process (to be added today or tomorrow). You are enclosed in a plexiglass type box during all off this, and besides hearing the music of your choice that you listen to during this, you have no idea of what is taking place. There are no flashing lights or laser beams searing through your body, you feel nothing, it's like having a 5 minute x-ray taken. I have just finished my second treatment and feel fine so far.  The side effects to watch for are only tiredness and maybe some pinking of the skin area. The zap sessions are carried out in 4 hour intervals so my next one is scheduled for 4:OO p.m. which is when Julie will take pictures for the site and also some video for the children.  We also took video of the ward today for the kids and plan on going back and forth with video visits between the children and myself. The hospital is just not a place for healthy children to be in, especially my 3 darling, little angels. So after tonight, 6 more zap sessions and then the harvest of marrow from Tom.   I'm told chances are also good of taking pictures during that surgical procedure for the site. That will be Wedensday, with the marrow going into me sometime that night. So all is well here, let's hope and pray all continues to do the same. Love and Peace, Greg

4-14-00 Well, things went too quickly to try to log as they occured, so I will backtrack a bit now that I have some time to sit back and recollect on the days' past happenings.  Transplant Day went FAST!  Tom was here at 6:00 a.m. and had the harvest done by 10:30. Two quarts of fluid (that's 1/2 a gallon!) were taken from Tom.  Pictures were taken for the site by Michael Paul, the Physician Assistant who coordinated the harvest.  Thanks Dr. Paul!  When the harvest was finished, he told us that Tommy produced "lots of good cells."  While this was going on, I was still busy finishing up on my zap procedures.  After my last one at 4:00 p.m., instead of "transport" taking me back to my room, Jody and Julie whisked me away to visit Tommy in the recovery area to see how he was doing.  There he lay, long and lanky, lookin' like Casper!  He said he was weak and tired and knew he would feel better in the morning.  I thanked him, and told him that I would talk to him later when he was in better shape and I would be the one feeling worse for the wear. 

The word was out that the transplant would occur at 9:30 p.m., so while the cells were being prepared (separated, cleaned and washed), we began preparations.  Julie and my friend Bill were there at 9:30, along with my nurse, (named Julie -- not to be confused with my wife), and the marrow.  Nurse Julie set up the heart and oxygen monitor and we began.  The bag of marrow contained 6 billion cells, all set to be cut loose and find their way to their new home!  My vitals were monitored the entire time and for the remainder of the evening.  I even managed to find some sleep along the way.  The only problem with the transplant was that my blood oxygen level was low and I had some tightness in the chest.  This is a fairly typical reaction, and was cured by placing me on oxygen for a couple of hours. 

The next morning, I awoke at 4:30, had vitals taken, blood drawn, and went to get a cup of coffee and for a walk around the now familiar eighth floor BMT unit.  When the first shift nurse came on board, she noticed some blood on my T-shirt, so we hit our first wall.  Allegedly, I had tugged on the Hickman sometime during the night and caused the bleeding.  Nothing was damaged, but I spent the entire day laying in bed flat on my back, trying to stop the bleeding, changing the dressing and adding a five-pound weight to add pressure to stop the bleeding.  By approximately 4:30 p.m., we had accomplished our goal and were ready to face the next battle of the transplant! 

This next battle was becomming a joke as much as it was a concern, because it had to do with not having a bowel movement for five days and  how many "hats" I would fill for the nurses to check and emply when I finally had to go!  I asked the nurse in advance if I could have extra hats because I knew it was coming.  They gave me a total of three, which I filled not once, but twice!  Whew!!!  Concern number 2 out of the way (no pun intended), and I could really relax for a while.  The night was slow and I could start to feel the beginning of soreness and tightness in and around my throat.  I slept OK, mainly just rested, but that's all I need right now.  Friday morning, I awoke at 4:30, had a cup of coffee, came to check the laptop and took a walk in the hall.  Soreness in the mouth was much worse.  My hands are starting to puff up (a side effect of the steroids) and generally starting to feel other effects that are on their way.  Counts are on their way down, and I guess so, for I am very tired and sore, and just kinda feeling like shit! 

Julie, my mother and my sister hve been here the last three days and I thank them for supplying the humor that was needed here around my environment!  They are all gone now and it's 2:30 Friday afternoon and right now I just need to lay back and close my eyes and relax.  I've been pushing it and I can feel my body saying take a time-out!

Love, Peace and Prayers to you all

Greg

04/15/00:  Day +3 and all is working.  Were going down, counts, feelings, hours, whatever!  As I said yesterday when i signed off, I could feel the transformation taking over.  I spiked a fever at 102 and just felt it was time to rest.  Chest x-rays were ordered and a bunch of blood cultures were taken.  I'm having a hard time putting things to words right now, so it is difficult to write at this moment.  Too many things are going on in my head right now, but all are of positive thoughts.  I can see it may be a couple of days before I might be able to explain waht it is that I am going through right now, inside myself, feeling and listening to the body that is changing as a whole new process begins to form a new physical awareness.  I must relax.  it is all just too much to talk and write about at this time.  Thank you all for your prayers, thoughts and wishes.  Love and Peace Greg. 

4/17/00:  OK, folks, Greg is just not able to continue the diary at this time, so I am going to attempt to do it for him.  I am going to apologize at the outset for not have the wit and humor and insight that he has, but I can only tell you what I have been observing.  Please keep in mind that this is all from the caregiver's perspective.  I don't know EXACTLY what Greg is feeling, I can only tell you what I see. 

Today is Day +5.  The blood cultures from Day +3 came back empty.  Therefore, we do not know what type of infection Greg may be fighting that he is spiking a temp.  Over the weekend, it hovered around 99.  Greg has been on an antibiotic called Cyclosporine (sp?) and was being given that through the Hickman.  Unfortunately, that particular drug is known to cause headaches, and it did a whopper of a job on Greg.  He was in quite a bit of misery Saturday night, and I don't think he even remembers my being at the hospital.  We managed to get him some relief with new painkillers, thanks to Nurse Julie. 

Greg spiked a fever of 102 again Sunday night (Day +4) and again was taken for chest x-rays. The x-rays show no sign of pneumonia, so that is a good thing.  Blood cultures were again taken, but the results won't be back for a few days.  Greg is still on antibiotics, but the Cyclosporine is being given in pill form and hopefully will not cause the headaches that the IV form gives him.

Greg is finding it very difficult to talk right now because his mouth and throat are covered with sores from the high dose chemo and total body irradiation.  Unfortunately, this means it is difficult for him to eat as well.  He did manage to eat some mashed potatoes, mooshed veggies, and his strawberry shake.  As long as he keeps at a minimum of 1,000 calories per day, he will not have to go on IV food.  One of his goals is to avoid that, if at all possible, but it is difficult, to say the least.  Greg has also been experiencing some moments of confusion.  This is most likely due to the fact that he is receiving so many different medications.  This is normal, but still frightening.  He does not always remember from one moment to the next what was said or what is going on around him.

Greg is trying to walk around the unit, but whereas it used to take him 2 minutes to do the entire unit, it now takes 10 to 15 minutes.  He is very slow and slightly unsteady.  While some of this can be attributed to the morphene he is now taking for the mouth sores (he has his "Jeopardy" button available whenever it's needed), it is also because his white counts have completely bottomed out.  The hope is that by next Wednesday they will begin rising, and we will see Tommy's cells going to work in there.  

Greg has been a real trooper through all of this.  When asked how he feels, he keeps saying that he feels the way he is supposed to feel.  While this is good in one respect, it is bad in another, because he won't tell the nurses or doctors EXACTLY what he is feeling, so they may not be able to catch something that he thinks is normal, but is actually not.  That's where I come in.  I push and push and push to find out EXACTLY what is going on in there, and then tell the nurses.  That's my job as wife and caregiver.  I want to make sure he gets the best possible care there is, which he is getting, but the staff can only help him if they are told what is wrong.   

I think one of the scariest parts about all this is seeing a man who is used to being very active reduced to this condition.  This is very difficult for me to see, and I have a hard time leaving him every day.  I know I have to go to work, if only for my own sanity, and I know that I have to leave him to get home to take care of the kids and get the housework done.  I just miss him so much.  I need him around and his children need him too.  Every day when we come home, little Abby sees his van and says "Daddy home?"  Whenever she talks to him on the phone, the first thing she says is "Daddy done?"  All three kids miss him terribly.  It is so hard trying to explain what is happening and how their Uncle Tommy saved their daddy's life.  They just are too young to understand.  There are times it is hard for ME to understand it all.  I just know that this is God's plan, and we have to keep the faith no matter how difficult it may be.  Please, keep Greg in your thoughts and prayers.  We need him back home.  We need him healthy.  We just plain need him. 

I have to mention to everyone that Greg's employer, and his boss, in particular, have been absolutely WONDERFUL through all of this.  At this very moment, there is an employee-wide fundraiser going on, spearheaded by his boss, Dan, and we have now found out that the company will match whatever the employees contribute.  After finding out that the company would continue to pay the employer portion of the health insurance, I was so grateful that I couldn't have asked for anything more.  Now I have found out about the company matching the funds raised by employees, and the owners and shareholders themselves are personally contributing, so they, in essence, are contributing twice.  I cannot thank these people enough.  I am at a point where I do not even know HOW to thank them.   I just don't know what to say about the generosity of these people.  They are truly "Easily the Best."

Love, Peace and Prayers,

Julie

4/19/00:  Well, folks, today is Day +7 for Greg.  I'll  start by saying that Greg is doing as well as can be expected.  He has had a few fevers, which initially scared the crap out of me, but I have come to terms with the fact that although fevers are the enemy (as harbingers of infection), they cannot be helped when you have NO immune system.

The good news is that the cultures from Monday are back.  The bad news is that the docs have identified a fungal infection that is most commonly associated with the hickman line. Greg is being treated with a drug called Amphoceterin.  This is a very powerful anti-fungal drug that children often call "Ampho the Terrible" because of the side effects.  Only one out of ten people will suffer severe side effects.  Unfortunately, Greg is the ONE!  He ended up with a high fever (they didn't tell me how high), and shaking and chills and confusion.  Because of that, when he receives the Ampho tonight, he will also be given another drug to counteract the side effects.  There's always another drug to fix the side effects, or two . . . or three . . .

Greg is also receiving a drug called Vancomyacin.  This is an antibiotic.  He was not having any side effects from this drug when I left at 4 p.m. today.  He has been getting this one since Transplant Day, April 12.  This is automatically given (prophelactically sp?), to try and head off an infection before it starts.

Right now, Greg's mouth sores are really bad and his tongue is rather swollen.  It is bad enough that he is receiving a steady dose of morphine in a "PCP" pump, and has his "Jeopardy" button to hit when he has any breakthrough pain.  He can hit that little bugger every 15 minutes to get another dose.  He's pretty out of it (as the pictures in the photo album show), and really doesn't remember from one moment to the next.  Between that and the "shakes" that he has from all the medications, it has been very difficult for me to see him this way.  One thing I really noticed is that his hands are so white, that they remind me of an old man's, especially when he is trying to do something and is shaking so bad that he can't do what he wants.  That is one of the things that is so difficult. 

He is "with it" enough to be able to snip at me for the littlest infraction, real or imagined!  (ha, ha).  It sometimes is hard to bite my tongue, but then I remember what is happening to him, and I would gladly bite my tongue until it bleeds, if it would make him feel better.  I have learned to ignore this (which took a while because his actions have been reminscent of the days when he was drinking -- only due to the medications this time).  I have decided that if this is the worst it gets, I can most certainly handle it.  My shoulders have become so strong that it's not even a burden to bear any longer.  This is just who I am.  I am the wife, caregiver, mother of three, and the person to whom he feels most comfortable letting his discomfort show!  I am happy that I am able to be there for him.  He is my rock and my inspiration.  Everyone says that I am so strong, but I have to tell you that HE is the strong one.  I cannot say that I would be able to handle all of this as well as he has if the tables were turned.  I just wish there was more I could do for him.  It's so difficult, leaving him every day after only 4 hours, but there's the kids, and dinner (what's that?  I certainly don't eat it any more), and then there's baseball practice for Aaron, and baths for the girls, and Aaron's shower after practice, and homework and bedtime, and on and on and on it goes.  Those of you who have kids know what I mean.  I'm trying to be a single mom, which is difficult in itself, but I have also to find the time and strength to spend at the hospital, make sure the kids are taken care of when I'm at the hospital (thanks to their babysitter, Rosemary, that's not usually a problem -- thanks Rosie!), but also go to work and do all the other "mom" things . . .  Then I think of the battle Greg's body is fighting.  Well, my problems here are pretty slim in comparison.

So, on that note, I will end this entry.  Sorry it's not more upbeat.  I guess I'm just feeling blue right now.  Please keep Greg and the kids in your prayers.  We all want him back home, need him home.  But we also need him healthy.  Pray for that health and strength that he needs so much.

Love, peace and health to everyone.  Julie

4/20/00:   So, today's post will not be much different from yesterday's.  The weather here in Southeastern Wisconsin has been really crappy.  I mentioned the cold and rain to Greg and told him he picked a good time to have this done, and his response to me was "Well, I planned it that way.  If I can't go golfing, nobody can go golfing!"  I think that's the first time he really made me laugh out loud!  What a good feeling that was! 

Greg is still suffering from immense confusion most of the time. He had been receiving a steady dose of morphine, and could hit the button any time he wanted more.  He was also still on the Ampho.  This afternoon, Dr. Akasheh ordered that the continuous dose of Morphine be turned off, but that Greg could hit the button any time he needed it.  Nurse Becky took care of that right away, and we're hoping to see some improvement in his mental state tomorrow.  Greg is also off the Ampho, because that can add to the confusion.  Hopefully, these measures will cure that, and Greg will once again know where he is.  It was so strange when I was there today.  At one point, he was resting in bed, and suddenly his arm comes up and he's waving it around like he's conducting an orchestra.  Later, when he decided that he's had enough of his popsicle, he started hollering for Aaron (our oldest), to come and finish the popsicle.  I had to remind him where he was and that Aaron wasn't there.  He was just so different.  His tongue is so swollen that it's difficult to talk.  Try holding your tongue with your fingers and talking -- that's what he sounds like.  I think it may have been less difficult to see if he had been able to talk normally.  The way he sounds when he talks just seems to make everything that much more obvious.   I'm praying that he will once again be coherent tomorrow. 

That's it for tonight.  Love, peace and health to everyone.  Julie

4/24/00: We are now at Day +12.  Greg has been taken off the Ativan, which is an anti-nausea medication, but also works as an anti-depressant, so it helps to calm him down.  His basil morphine drip (the steady dose) has been reduced to 3mg per hour (down from 4mg per hour), and he has been a little more coherent.  However, taking him off the ativan has made him more combative.  His mom, Irene got to the hospital at 8 a.m., thanks to Jody, and she stayed until about 4:30.  I got there at about 12:15, and stayed until 5:15.  For a good portion of that time, Greg was sitting in the recliner.  At one point, he wanted to get out, and was quite upset with me and his mother that we wouldn't let him.  I was holding down both arms, and Irene was helping me.  He was so strong!  We could barely restrain him, and at one point both shouted at the same time "GREG!" which although didn't calm him down, did bring two nurses and the doctor running!  It took Nurse Julie to calm him down.  I think he really thought his mom and I were just being mean to him!  At another point, when I took his hand away from his NG tube, he grabbed my wrist so hard, he left red marks!  Geez, it's amazing how strong he still is, even after all this!  He did calm down more later in the day, and at about 2:00 or so, his brother Gary showed up totally unexpectedly!  That was so nice!  Gary said that after seeing him on Easter Sunday, he just had to come!  That was a big step for Gary because he HATES elevators (and hospitals, too), and to come alone . . . well that meant a lot to me (and it will to Greg once I tell him that he was there). 

Some good news here:  Nurse Trish got Greg out of bed and up and walking around for a few minutes!  We need to get him moving, because his stomach is still quite bloated, and most of it is air (ok, it's gas, I'm trying to be delicate here).  In order for his intestines to start functioning properly again (and aid in getting rid of that gas), he has to start moving around.  We want to hear him tooting away as he's walking down the corridor!!!  What a joyous sound that will be!  (ha, ha).  Really getting down to the nitty-gritty basics here, folks, and Greg has always tried to be brutally honest about what is going on, so I'm just letting everyone know what's really happening!  It's kind of a sad state of affairs when I'm excited about things like this, but hey, we were in the bowels of hell for a while there (no pun intended), and it's just taking some time to climb back up.  I've always said that little things make me happy.  Right now, it's just those normal bodily functions that people don't mention in polite society that are what is needed to help make Greg feel better (and get rid of that awful NG tube). What can I say?  If that's what it takes, then it's a good thing!  :-) 

The best news is that Greg's Aboslute Neutrophil Count (ANC) has been rising!  The neutrophil's make up 50 to 60% of your white blood cells.  When the neutrophil count gets below 500, a body is at risk for serious infection.  Greg's ANC on Saturday, April 22, 2000 was at 100, and the doctor's were able to tell that these were Tommy's cells!  That means that Tommy's cells have started to engraft, and are starting to multiply and do exactly as they are supposed to!  On Sunday, his ANC was up to 200, and up to 280 on Monday!  Dr. Akasheh said that once Greg hits 500, he should be feeling 200% better than he is now!  Please keep those prayers coming.  They're working!  I will be sure to write more as things progress!  Take care, everyone.  Love, Peace, Health and Prayers.  Julie

4/25/00  Well, today is the day we've been waiting for!  Greg's ANC is up to 588!!!  Holy Cow!  Those cells of Tommy's are working their butts off in there!  Greg is feeling much better right now.  He's actually sitting up and eating at the moment!  Not much, just clear liquids, but it's a start!  Greg is also now off the NG tube.  That was taken out just after I got here at 12:30.  This is so wonderful!  From here on out, things are only going to continue to improve!  Greg's medications have been changed around quite a bit, due to the other problems he had been having, but now he is pretty much back to the normal BMT meds.  He is currently getting Cefepime, Vancomycin and Ambisome.  These three drugs are considered major antibiotics, and it is because of these drugs that Greg has not had any major infections!  The problems that he previously had were not related to any type of infection.  I have to run and help Greg walk around and take a shower!  Will write more later.  Love, Peace, Prayers and Health to everyone!  Julie