February, 2000 Diary Entries

Today is Wed. 2-2-00, Groundhog Day for those of you who believe, the sun is up and rising in the east here in Sturtevant,WI, so here the groundhog will see his shadow in the 5 inches of snow that we have.  To catch up from where I left off, last Friday my brother Gary and his wife Julie went with us for a fish fry, which to some is a big deal here in Wisconsin. We went to the Dead End Saloon, Biker Bar, Ma and Pa family dining type of place, great food and relaxing, even with the children. Saturday morning woke up feeling groggy but got my butt moving and seemed to be alright.  We went to the clinic for my Neupogen shot and just kind of tried not to be crabby towards my wife and children --  too many mood swings. We decided on Sunday that after my shot we would take the kids to my parents' house and ALONE my wife and I go to my boss' SUPER BOWL party. It was a nice change of pace for both of us.  We stayed for the first half and went to pick up the children and head for home to do the PROJECT. Aaron, my 8 year old son needed to make a timeline of his life for school.  Imagine how much fun we had going through pictures that have just been accumulated in one big box! Memories were flying faster than a team of Blue Angels.  It was great!  My mission next week will be to organize these memories into chronological order.  This truly is going to be fun -- we're talking 15 years worth of pictures!

2-3-00 :  Well, as of 2-3-00 the time clock has started, on Monday,2-7-00 I go in for a limited sinus, total body ct-scan at 8:30 in the morning YAHOO!, Tuesday, 2-8-00, I go in for another MUGA scan, (heart function scan), OH!BOY!!,Wednesday, 2-9-00, I go in for a Pulmonary function study, OK!OK! Thursday,2-10-00, more bloodwork I'm very glad I have good veins, so are the nurses! Thursday 2-17-00, assessment on Pulmonary function study and gotta have more bloodwork. (Whew!) Friday, 3-3-00, placement of Hickman Catheter, a tube they attach to an artery just below your collarbone using local anesthesia, this will be the main port of entry and exit for all those good things, and which worries me the most! I knew I'd get wimpy somewhere along the line! Come home and hopefully have my last fish fry for a while. Saturday, 3-4-00 admittance to hospital Froedtert in Milwaukee, for the games to begin,Sunday, 3-5-00, my mothers Birthday, wait till she sees what I give her! IT WILL brighten up her day  I hope! Well that's the program for now all subject to change of course but I like change it always did me good! So here I sit it's Friday, 2-4-00, doing laundry, just finished watching Saving Private Ryan, it was O.K. I always see movies when their ancient and wonder how people can pay the price they do to see first run movies, at the price they pay, Oh well as I said earlier "cheap I am". I am now listening to the music of Bjorn Lynne whose music my wife and I will once again try to download, this time minus the HAVOC it caused to the site last time, this will add a FINE touch to the site. Other than a head and chest cold and more meds I'm just Fine thank you!, and off to the laundry, time to switch loads and re-load. Thanks for stopping in, and for you regulars LOVE YOU ALL!! Next update, ya never know!


2-6-00: Well, you never know! is here. Subject matter today is, 1) Health, not good! I think my body is becoming immune to all the medication that I have neen taking since I've had the head and chest cold that came on last week. I've been getting worse! yikes! 2) My wife. I have lovingly given her a new name to go by, www.julie.busy.  O.K. explanation: wonderful wife webmaster.Julie. I'm sure if you are one of the beloved regulars, or repeat visitors, but if you are, you will notice the vast overhaul in the site format. It is 6:30, Sunday evening.  Last time I touched the now much improved site was Friday.  Thus she has been busy! 3) As you come into the site, you, the family, friends and visitors, I have been responding back thanking everyone for taking the time out to do so. 4) We still cannot bring my loved music to the site, it's just a tease you know to keep everyone coming back to see when, why, and how we finally did it, you know, kind of like how they do it on the soap operas, which no, I do not watch. 5) BMT fundraisers.  I really do appreciate the hard work of all who have helped so far, but one person in particular has found a spot in my heart since we arrived here in Sturtevant, in November, 1998. Her name is Mary, we never knew each other until Little League started out here in June of 1999.  She is the mother of one of my son's teammates, on whose team I helped coach.  For the previous 2 years I was my son's Coach and really for his sake and mine, wanted to be able to have someone else instruct my son in sports, you know, Coach's son thing. I was the voluntary tournament director for a 3 day event which I was totally in control of until the opening day of the tournament.  While going thru rounds of CHOP, I was struck with a mild case of pneumonia. Mary, along with 3 other women, Katie who at the time was caring for our children while we were at work, Shawn, very pregnant at the time, and Sue who grilled her butt off, just took the books and ran the whole thing.  They were outstanding and made the tournament a big success.  My thanks to them is never-ending.  We stayed in touch with everyone and when the BMT decision was made, Mary jumped up to the plate and started a BMT Fundraiser thru sales in Tupperware, for whom she is a consultant. I'm asking myself, who is this person?  Do I have an earthly angel or what? To you Mary, our Families will always be willing to answer your call if and when you need us.  I guarantee it. Tomorrow start the tests and hopefully a Greg that feels better because I truly am getting used to this being sick shit all the time and I don't think mentally that's a good sign!!!!! Tomorrow the rest of the news.


2-8-00: Still sick! No better, no worse, this sucks! John my brother-in-law, came down to visit for the weekend, he left today, I thought that was nice that he came to see us. I think he left knowing for sure he will never want to have children, after seeing ours in action these past few days. Monday, 2-7-00, I went for my total body CT-scan. I arrived at 8:30 to drink the contrast that flows thru you for detection on scan, then sat and read a book my neighbor gave me to read about mental and physical wellness known as CHI GUNG, before I knew it they were calling for me at 10:00. The CT-scan: they lay you on your back, insert an IV into your arm, have you stretch your arms over your head so that your legs and arms are fully extended and ask you, are you comfortable? Mr. HOW do you say your last name? The table then makes 1 full pass thru a large doughnut shaped photocopy machine, for 1 full length scan of your body. Now the fun starts.  the nurse slowly injects dye thru the IV into your system and yells to the tech hiding behind the wall O.K. let her rip! You slowly feel a warming flow  o thru your body from the dye and the next voice you hear is that of a computer generated female telling you to hold your breath. AS you hold your breath the scanning doughnut makes 1 complete cycle around your body, when finished, the voice then tells you to release your breath, and the table, hard as a rock, that you are laying on moves forward one-eighth of an inch and once again you are told to hold your breath, and so on and so on, after an hour and a half your body finally makes it's way thru! They peel you off the table, take the IV out and tell you to have a nice day! Today, (2/8/00) I had the MUGGA scan, this shows how well your heart is functioning and if any damage was done by the CHEMO.


2-9-00: Well it's 4:30 a.m. my problem with sleeping is still bothering me, head and chest cold still here, which I have also had since the end of my Rituxin treatment, shoulder soreness, which is flaring up big time. I upped my sleeping meds to 1 at supper and 1 when I go to sleep in an effort to help with the problem.  Hope this works.  Also will have to have cortisone injections in the shoulders to relieve the shoulder pain and allow for better movement in these joint areas. To finish about the MUGGA scan, they inject thru an IV a radioactive contrast which flows thru to the heart where they then photograph 2, ten minute sets of pictures, one on top of your chest and one on the left side of your chest.   Once again lying flat on your back on a rock hard table. Julie has added a photo album to the site.  Please, if you haven't checked it out it, do so.   It will be added to on a regular basis.  Today I go for a Pulmonary Function Test, this will measure my lung capacity. I use to be on my feet daily at work, and would always walk with the children around the subdivision on a daily basis.  I haven't done any of that since the week before Christmas, so this should prove interesting.


2-10-00 : It was another bad night for sleeping, my body and mind just don't want to rest. The walk I took yesterday proved to be rewarding, I walked the whole subdivision in 20 minutes, that's pretty good, and I felt good. I felt I was ready for the Pulmonary Function Test. This test proved to be the most physically demanding. I was required to breathe thru a mouth piece similar to that scuba divers use, with a clip on my nose so that all the air input and output went thru the mouthpiece. There were several tests, which lasted an hour. At some points when you had to expel the air that you had drawn in the tech would push you till you just could not possibly think there was anything left in you and yet there was! Three times I felt as if I were going to pass out! I asked the tech, just for my general knowledge and his experience of monitoring people on a daily basis how I did, his reply made me feel good! He said you hit the highs and you hit the lows, that's good! Well that was yesterday, today I arrived at the clinic early for my bloodwork draw and asked if I could receive a cortisone shot in my left shoulder, seeing as the pain and stiffness was becoming unbearable, they slipped me in first and I received the shot.  Then I asked about the sleeping problem and was given a prescription of Ambien to help with the insomnia. I'm finding it hard to keep my spirits up right now.   I'm just too tired and weak and sore. That's the nice way of saying I feel like shit! Which reminds me, the snow is melting here and there are doggie land mines to be cleaned up! More soon.   Hang in there all you regulars! Love Greg


2-14-00:   Well Happy Valentines Day, to me every day is Valentines Day. Where to start, I see it's been a while since my last entry, insomnia continues, shoulder soreness, still there, head and chest cold ditto! But! Mentally, I'm adjusting and feeling better. This book on CHI GUNG that I am reading is starting to sink in. Inner awareness brings inner strength to help deal with discomforts that are affecting myself and I am learning to become stronger at this and will have to become much stronger for what lies ahead.  Enough said.  I've found the Ativen and Ambien medications to really be of no help for my insomnia and stopped using them 2 days ago, I am using inner self techniques and as of last night found improvement in sleep.  Although it was in 2-1/2 to 3 hour shifts, it was an improvement much welcomed. Saturday we had my family over for what is turning into a bi-weekly gathering of all of us for pictures. These pictures have been added to the photo section, the evening portion of this gathering is turning into a big night for the Chinese restaurant in Sturtevant, as we all order a different dinner delivered and have our own buffet.  This really seems to work well and everyone is happy! I like having everyone over, even though it's due to the upcoming transplant, we are all growing closer together, and it's not just on the weekend. My sister Jody and sister-in-law, Julia are in contact with me on a daily basis, sending crazy e-mails and visiting the now growing site.  Julia also copies the diary and shows my brother Gary.   So, O.K. medically, I saw the Pulmonary expert today for results on the tests I took last week. I found this man to be one of the most interesting of all the physicians I have been associated with.  He actually took time to teach me about how the respiratory system works from the top of your head to the bottom of your lungs, along with just personal questions of how am I dealing with the Road I am on in this stage of my life.  We agreed on the inner self thing, and he said "It's FREE, if practiced and followed, it works."  This was the finest 2 hours I've ever spent with a doctor!  He also left me with his e-mail address so I may report a follow up to him without going to the clinic. The follow up includes, the state  of my sinus and bronchial condition which was apparent after the testing (for which he gave me an inhaler) (ipratropium bromide and albuterol sulfate) for you medical buffs! Also a nasal spray (mometasone furoate monohydrate) to be used daily, and I must say, after taking these in his office along with his showing me the proper way, a noticeable improvement was detected.  COOL! Tomorrow I call the hospital and get the lowdown on the dreaded HICKMAN CATHETER placement procedure.  Then Thursday, back to my second home, the clinic for what else, more blood work and an onc consult. Well good night for now, glad to have you along.


2-18-00: My gosh! it's been a slow week on the medical front, I'm surely not complaining though! MUSIC! What Music, my Wonderful, Wife, Webmaster, Julie, has finally found the key to Tuneage. We started out with something from my earlier days, but seeing as not everyone will enjoy such easy listening, we will mix the sounds according to the way I feel.  Sounds O.K. to me. I hope now that the mystery is solved we don't loose those who were only following to see how long it would take for us to figure out the download mystery. I've been to some beautiful web sites these past couple of days learning and sharing with others and have decided to add theirs and others to a "links page" on my site.  This will be added soon. On Tuesday, I started conversation with a wonderful man, my age and going for Transplant in March also. He resides in the state of Washington and so far we seem to be enjoying each others daily communications. To the medical front we go! Yesterday, I went for bloodwork, and all the test results from the previous week, were discussed with the onc. 1.) CT-Scans- some concern about the sinus region, all other areas, neck, chest, stomach, and pelvis area show progressive improvement, no new abnormalities. 2.) MUGGA scan- (heart), Minimal borderline abnormal left ventricular ejection, calculated at 49% this time, compared to initial test date 3/99, at 78% this shows and tells us the damage the CHEMOTHERAPY creates and does to the heart itself. 3.) Pulmonary Function- O.K. I mentioned in my last post, being treated for sinus and bronchial condition. 4.) Bloodwork, a little low on some counts but nothing to be concerned with. Today, I have with me my 2 little angels? We are watching a mini-blizzard outside our windows, Aaron is by his cousins house to do guy things Thank You, Martha. I was going to deliver to my sister her Tupperware Fund Raising order, but the snow is putting a damper on that! I would like to say this Fund Raiser has really taken off for my Earth Angel, Mary, and my wife and I are just overwhelmed with her efforts and the responses she is receiving. THANK YOU ALL SO MUCH! Sorry about the time in between posts, we have 2 weeks to go and then the post will be on a daily basis as we will be there, the BMT process itself. Love and Prayers to all of you and thank you all so much for stopping by.


2-21-00:  Today, Monday, we went to see the Radiation Oncologist. After two hours of touching and probing, questions and answers, X-rays were taken of my vital organs for fitting of  protective shields for the three day Radiation treatments. The shields will protect my Heart, Lungs, Liver, Spleen, and Kidneys. It was also determined I needed to have a total sinus CT-Scan, and a Stress Mugga Scan.  There is concern with these two areas to the Radiation Oncologist.   O.K. more tests I had nothing better to do anyway. Tomorrow, we see the BMT Unit Psychologist for an hour, then the Transplant Guru, Dr. Vesole, about some clinical trials he would like to go over with us. Wednesday, I'll go for the Full Sinus CT-Scan, and Thursday, the Stress Mugga Scan (Heart). I went for two good walks today, one with my wife to pick up our children from the sitter, and one with my neighbor Dick, total time one hour. I think this will help my body be more at rest when it's time to go to sleep, I'm still having problems with getting sleep at night. I think the real problem is  I miss the stress level that I was so accustomed to from regular daily activities of working and then playing outside with the kids. The fact that I have been feeling better and not doing as much as I  used to is also a factor I think, and mentally I will treat it as such! We had friends over Saturday and Sunday so the weekend went by way too fast, Dan and Tiff came Saturday to see the house and have dinner. (Dan is boss at work, Tiff his wife, who brought us beautiful Pink Roses). Sunday the door opened to long time friends Don and Vicky who had just returned from a vacation in Mexico and my brother Gary, who stops by every weekend. Please take time to visit the links Julie has added. Looks like there will be a daily posting this week so please stop by as they should prove to be interesting. Peace Greg


2-22-00: I need a big Prayer from everybody for my Washington brother Tim Allan. His hopes for Transplant this month are now down to only one of six matches, results will be known by next week, please keep Tim in your prayers for a match, Thank you! The Bloodsuckers were out at the Transplant Department today. The person who drew the 20 vials of blood turned out to be my Oncologist's wife. We talked quite a bit as it took some time. We then met with the Psychologist who asked how are we managing with the road were on and she seemed quite impressed with our Mental Stability. I then had to fill out a 140 question true or false information page concerning my state of WHO, WHAT, and WHERE am I. Next came the Transplant Coordinator and we talked about the 3 trials they were working on and would I like to participate in them. The first one concerned Blood Platelets, regular vs. specially treated Photochemically, the second trial concerned a drug to reduce Kidney and Lung Complications after Transplant, the third trial a new drug to fight off Fungal Infections. We agreed to all three knowing we could stop the trials if the need be. We ,I signed off on all the other good forms and we are now in the books. 3-3-00 Hickman Placement, 3-4-00 Admittance, 3-4 to 3-10, Intensive Chemo and 3 days TBI, Total Body Radiation and 3-10-00 the Transplant itself. Tomorrow the Full Sinus CAT-SCAN.                  PEACE GREG!


2-24-00:  On the medical front:  Full sinus CT-SCAN, They lay you on your stomach and you put your chin on a padded block. They run you thru the doughnut once from the top of your head to the base of your neck. They then take what they call slices, moving one-eighth of an inch at a time of this area. You then turn on your back and repeat the process, the total amount of slices added up to 20 per side.  An easy test, finally. Thursday I went to the hospital for the STRESS MUGGA SCAN, not as simple! I first was taped on my chest and stomach area and hooked up to 17 monitoring wires.  Of course then, "let me inject this RADIOACTIVE dye into your bloodstream," said the smiling young man. I then was laid on my back on a table (with padding on it this time!). They strapped my two feet into pedals just like that on a bike, and the million dollar question was asked again, "are you comfy????"  They took two  2-1/2 minute pictures of my chest and the left side of my chest to start with. The fun was now about to begin.  I was told there would be three sets of pictures taken next, each would last three minutes. During these pictures I was to pedal at a good steady level, keeping the needle on the monitor I was looking at in the middle of the measuring gauge, NOT EASY. They increased the resistance after each 3 minute cycle.  The last cycle felt like I was pedaling up Pike's Peak, But I did it! (BARELY) I was told I was one of the very few to reach and finish this cycle.  I was awarded 2 cups of orange juice. (HOT DAMN!) I was told they could see no blockage and things looked fine. My oncologist's nurse just called and said I will now take myself to the Transplant Oncologist and review the results of both tests Monday of next week.  Hopefully all looks good and we can get on with the Transplant. I love you all.   PEACE!     Greg    P.S. How's the new music? Can anybody Name That Tune!


2-29-00; And now for the Weekend update! Friday night my brother Gary and his wife Julie took us, my wife and I, out for a steak dinner and a good time. Not as crazy as the old days, but we enjoyed it. Thank you so much! I would also like to mention my sister Jody and I went for lunch on Wednesday in her town of Waterford.  It was very nice as well. I would also like to thank my sister Jody and all the good people at Miller Brewing for donating a laptop for my use during my hospital stay. Truly amazing.  They all must be going to the site. Saturday my brother-in-law, my friend, John came down from up-north with his Annie, who is truly a trip, to spend the weekend.  I was going to roast a whole chicken on the grill and while I was preparing the grill for the feast, 3 heads poked out the patio door and asked me "What are you doing?"  Well I said "What's Up?" They then produced 4 LARGE lobster tails, so I said "WOW, O.K. no problem!" I feel like a turkey being stuffed for Thanksgiving.  We had a good time!  Monday night was homemade pizza, it doesn't get much better than that!  On the Medical front there is a concern on my Sinus condition. I'm to see an Ear, Nose, and Throat guy today.  CT-Scan showed Major Blockage in sinus region and thoughts of infection are looming. Personally I've had a sinus condition throughout my years.  Maybe we'll finally see what's up! That's it in a nutshell, I hope when we crack it all is well and the Transplant clock continues on schedule. Once again Thank you Jody and Miller Brewing! Please people:   If you have the time, They have the Beer! Miller Beer! Remember that one?!   Cheers and please visit the Miller site.  We've added their link to the front page.  Peace and Love Greg