Weekend

After a week filled with the emotional ups and downs of learning that my former mentor and colleague, Andy Lonigro, passed away and Kelly's desire to find a way to insure she would have her mother present, in some way, at her and Doug's wedding, the weekend was a welcome opportunity to slow down some. Ryan and Kelly stopped by so we could wish them a happy 6th wedding anniversary, and to see how Kelly is doing at 5 months pregnant. Nancy loves to see her children -- and even with all of the activities that are part of young peoples' lives, all of our children have been here often for Nancy to enjoy their company. Nancy's IV fluids had been increased on Friday and we are now trying to determine whether they have been increased enough. Nancy is still more thirsty than she feels is comfortable so we may still need to increase the fluids again. For now, she is drinking apple juice, tea, Gatorade and water -- lots of each. I am getting my exercise keeping her glasses full and NG-tube collection canister empty.

Yesterday, Nancy was treated to a manicure by our friends Jennie and Scott Iverson. Nancy will now have beautiful manicured nails painted a neutral beige color for Kelly and Doug's commitment ceremony on Monday. I can tell you that looking forward to this event on Monday has made a huge difference in Nancy's attitude. Being confined to a bed set up in the living room, tied to an IV pump and a vacuum pump to evacuate fluids in the stomach and denied the opportunity to eat when those around you continue to do so, I see how important it is to make sure Nancy continues to have things to look forward to. After Monday's ceremony and celebration becomes part of the past, Nancy will be looking forward to the next weekend -- during which her father, her brother, Dick and his wife Sharon and his children, Becky and Andy are visiting after their vacation in Door County, Wisconsin. Right now, family and friends are very important to Nancy's outlook.

Also yesterday, Ron Hazeloop, our neighbor Janny's son, who is visiting her for the weekend, helped me re-seat some of the paver blocks on our patio so it would be less likely that someone might stumble on them as we gather there on Monday night. Now I guess I need to do a little house cleaning -- between care activities -- before we have some of the immediate family members here tomorrow for the festivities. I guess continuing to plan "home based" activities is a great way to make sure I will keep the place clean and (relatively) neat.

Returning to a Schedule... Sorrow and Joy

I know I haven't posted an entry since Monday, but this has been a week filled with unexpected events... happy and sad.

Thanks to the help of many good friends, I have been able to spend 5 or 6 hours at my job each day this week at Saint Louis University. While I was at the university, Nancy was in the loving and capable hands of Sue and Owen DeBoer, Janny Hazeloop, Sue Valentine, and Carol Kolar. On Tuesday afternoon, I received the sad news from a co-worker, Joe Baldassare, that my former mentor, long time co-investigator and good friend, Dr. Andrew Lonigro, passed away after a long battle with complications of diabetes.

Andy Lonigro was the reason Nancy and I moved to St. Louis. After receiving my Master's degree at the University of Wisconsin in 1974, I was hired to teach biology in a Community College in the Chicago area. Shortly before I was to begin this teaching job, I received a letter informing me that an unexpected budget cut nullified my contract. I started working as a biomedical research technician for Andy Lonigro -- just until I could secure another teaching position. Well, that never happened. I loved doing research with Andy and came to St. Louis with him when he took a position in the Department of Medicine at Saint Louis University in 1976. After receiving my PhD degree under Dr. Lonigro's mentorship in 1985, I became a faculty member in the Department of Pharmacology and a co-investigator with Andy Lonigro at Saint Louis University where I remain today. It is always sad to attend the funeral of a respected colleague and good friend, knowing that I will no longer have the opportunity to enjoy his company or to discuss a research topic of mutual interest. However, when it is your mentor, it is especially sorrowful. Andy, I will miss you.

Also on Tuesday Kelly, our youngest child, who is planning to marry her fiance, Doug, in June of 2008, told me that she wanted to have her mom at her wedding -- so she wanted to get married now, in a private ceremony at our home with the immediate family members present. She and Doug wanted this so Nancy could participate in the wedding and Kelly could have both of her parents at her wedding, just like her brother and sister did. What could I say? I was touched that Kelly cared that much for her mom that she was willing to change everything to include Nancy in her wedding. I tried to be supportive, although both Kelly and Doug seemed to be entering into this now for only that reason. They are both still students at Missouri State University until December of this year. Becoming a married couple at this time would change their dependent status on our insurance, change their financial aid status and require a new approach to their future. Neither Kelly nor Doug were quite prepared for that.

Our associate pastor, Rev. Janet Pillman, gave us an alternative option that offered something for everyone -- a commitment ceremony. Nancy could participate in the ceremony, Kelly and Doug could both have both of their parents participating and they could maintain their same student status and we could still plan the actual marriage and wedding celebration for next June, to include extended family and friends so dear to us. Sue Valentine and Carol Kolar, Kelly's godmother, were at our home when Kelly described their plan. Sue and Carol were also touched by their concern for Nancy and offered to help Kelly & Doug plan the event.

Also this week, Kelly took her future mother-in-law, Jan Richter, her godmother, Carol Kolar, her sisters and her maid of honor, Adriane Tilton on a wedding dress shopping outing. She didn't find the dress she wanted, but she brought back a VHS tape of the whole event for Nancy to enjoy, and enjoy it she did! Nancy may be confined to a hospital bed in our living room, dependent on IV solutions and NG-tube suction for maintaining her life, but she still enjoys true "quality of life" everyday. Nancy has tried the red-white-and blue bomb pops, Crayola pops and a variety of others...loved them all. And, cricket got her first "grooming" this week. I added two photos of her after the grooming. In the picture on the left Cricket is playing with her favorite new toy -- given to her by Jennie and Scott Iverson. Cricket was afraid of the toy at first because the squeak it makes was too loud for her? But now, she brings it to everyone to hold while she pulls on it and bites at the squeaker.

However, a serious concern for me was that Nancy had been experiencing greater thirst as the week progressed. I was concerned enough about it to describe the excessive thirst, infrequent urination and progressive weakness that Nancy was experiencing when I talked to her nurse on Wednesday. When Nancy's hospice nurse, Janet, took Nancy's blood pressure today, it was only about 70/50 mm Hg, way below normal. Coupled with Nancy's weak and rapid pulse, the other symptoms indicated dehydration, even on the IV solutions. Janet called Nancy's physician and soon Nancy was getting a rapid infusion of 500 ml IV saline solution. Nancy is now on 25% more fluid per hour than she was getting before and after a few hours of that, it seems that her thirst is getting a little less intense. Now we will keep track of the symptoms and see how Nancy does over the next few days. Without regular lab tests, this home health care thing becomes a little of a guessing game, but it is still great to have Nancy at home. Thank you hospice.

Getting into a Routine

I haven't been to work in awhile, so today I asked Janny if she would stay with Nancy for part of the morning hours that Kelly was planning to be in the city (St. Louis) getting her engagement pictures taken with her fiance, Doug. I guess it was too hot and humid for the photographer, so Kelly and Doug returned home with no pictures taken. The hospice Aid came to help Nancy with hygiene issues such as a sponge bath and general cleaning up. Nancy said she felt better after that. Nancy was too tired to walk to the bathroom today for a more extensive bath, but the health care Aid said she would make sure Nancy got there on Wednesday.

Since I am also responsible for changing the IV solutions and I don't want to ask anyone else to also take on that responsibility, I had to be back home by 1:00pm (when the solution needed changing). As it was, I got back earlier, just because I want to be home with Nancy as much as possible. When I arrived, it was a pleasure to see that Rev. Pillman, our associate pastor at St. John UCC, was here visiting with Nancy. Nancy also had visits with Jerry Douseau (not sure of the spelling), a member of her book club and Donna Osiek before the hospice nurse came to change the dressing and put a new access needle into Nancy's port. Nancy seems to have a little more energy today. I hope she is able to maintain that energy for awhile. Right now, she is relaxing while watching Kelly's DVD of Grey's Anatomy (Season 2).

Ups and Downs

Today is Sunday.

Although I knew it would be hard to talk about how Nancy is doing with all of the kind people at our Church who care so much for her and have been praying for her all along, I wanted to let everyone know that Nancy may be getting more tired as each day passes, but she isn't in any pain -- even without any pain medication. We are both very sad that we have to face this, but our faith and the love of all of you makes it easier. I don't know how some people find the strength to go through this without our 3 Fs (Faith, Family and Friends). Our daughter, Kelly wasn't going to work until about 10:00 am, so I decided I could get to our 8:00 service before she had to leave. Thanks to all of you at Church with whom I spoke that wanted me to let Nancy know how you are keeping us in your prayers. Believe me, she knows. For those of you who may be reading this blog for the first time today, I hope the news it brings lets you know we are dealing with this as best we can. Please feel free to leave a comment. When we read those comments together, we often feel sad that things have to change this way, but we appreciate hearing from you.

As I mentioned, Nancy really had trouble waking up yesterday after taking that sleeping medicine on Friday night. Well, she started to wake up near the time some family members arrived for a support visit and impromptu cookout last night. Our children, Ryan, Amy and Kelly were there, along with Amy's husband, Henry. Sue Valentine, Ryan's mother-in-law, brought some tasty wine and even tastier dump cake. In fact, everybody brought something to make the dinner complete. I felt a little guilty eating when Nancy couldn't, but she was glad that at least she was able to have some chicken broth, jello - and the ever coveted popsicle. Even though Nancy can "eat" these clear liquids, the vacuum device attached to her NG tube just sucks the liquid back out of her stomach -- since it couldn't pass the intestinal blockage anyway. However, "eating" these items does give Nancy the pleasure of tasting some "food" when she feels the need for it.

Today we are mostly resting, watching DVDs, recalling memories and finding ways to make today, "Not Just Another Day".

"Be Careful with the Drugs," says the Phamacologist

For the time being, I may have to post information the morning after events occur -- just because the end of the day gets pretty crowded with "care"-related activities. In any case, the problem with the suction device for the NG tube was solved by an early morning visit yesterday from a hospice nurse carrying the proper NG tube fitting cannibalized from a new NG tube. The suction pump actually worked fine -- it just needed to be attached to the appropriate device. With that problem out of the way, we made our way through the day quite well. Nancy appeared stronger and more engaged in the activities going on around her. In the evening we watched the DVD of "Happy Feet", an appropriate title for the way we were feeling about the arrangement we had for Nancy's care.

Nancy left the hospital with no drugs, except for the IV fluid order. She isn't in any pain. The Pathways hospice nurse suggested we request a few drugs for problems (like pain) that might occur for which we don't want to be unprepared at 2:00 am. Nancy had been having some trouble sleeping at night so one of the drugs ordered was lorazepam, a drug used to reduce anxiety and to help with sleep problems. Since Nancy can't take pills anymore, they offered one that dissolves under the tongue and is absorbed right there. Nancy took one (only 1/2 milligram) before bed and it is now 2:00 pm the next day -- and she is still having trouble staying awake. I guess we will break those suckers in half if she needs help sleeping again! She did get a popsicle down before she fell back asleep though -- I think it was orange. Some things even transcend profound sleepiness.

Again, we thank you all for your prayers, cards, phone calls and visits. I think much of Nancy's motivation to keep going strongly has been the support given to us be so many of you. I am reading the comments to Nancy that have been left on this blog and I know she appreciates your concern.

Plan "A"

I am happy to report much better news today. Yesterday was really quite hectic so I didn’t get a chance to post an entry into this blog until this morning.

I went to work yesterday morning because the medical student, Duy Le, who is doing a summer research rotation in my lab, was presenting a research article at his Journal Club. Faculty members are supposed to be present for the Journal Club sessions in which their students participate - so I felt that I should attend. I got to the hospital a little before 10 am surprised to find that Nancy was preparing to go home from the hospital. She told me that Dr. VanAmburg assured her that she could go home with both the NG tube and IV fluids and that hospice would still care for her. This sounded like Plan “A” to us. We weren’t very fond of the alternatives. However, as we were told earlier, most hospice groups don’t supply and administer IV fluids. However most will work with other agencies that do. So, I worked with Nancy’s nurses & a hospital social worker to make all the arrangements with Pathways Hospice to arrange for the delivery of the hospital bed, vacuum pump for the NG tube and various other home care medical equipment items. At the same time, the social worker contacted OptionCare, the infusion people, to deliver the infusion pump and several days supply of IV bags containing a variety of salt and sugar solutions. In fact, except for me answering questions and making suggestions to the staff, the hospital staff efficiently set up the whole thing.

Nancy was home before 4:00 pm and she was resting comfortably in the hospital bed that we set up in the living room. She got to have our puppy, Cricket, sit with her (and bite at Nancy’s fingers. She is still teething – Cricket, that is, not Nancy!) and Nancy got another popsicle.

All seemed well -- until we tried to use the suction device on the NG tube. Oops… when Nancy was checked out, the hospital staff had inadvertently thrown away some of the needed connections for attaching the NG tube to the suction device. To make things worse, the suction device didn’t work anyway. The suction device is a vacuum pump – and it was clear that the motor was running and the gauge registered a vacuum, but the suction never got to the tubing. Luckily, the hospice nurse was still here and she tried to get service for the pump and a replacement fitting for the NG tube. As it turned out, they couldn’t get it all done so late in the day so we just suctioned her NG tube manually with a 50 ml syringe every several hours (the old way). I say “we” because a very dear friend of ours, Ann Lowry, who is also a hospice nurse, offered to stay with Nancy for the first night to make sure I got some rest and to make sure everything went well with Nancy on her first night at home.

Ann said Nancy had a good night. The only problem was that darn NG tube. The only fitting that was left on it was a tubing plug to prevent leaking of the tube when not connected to the suction device. Well, when Ann prepared to remove some fluid with manual suction (at 1:30 am), the plug broke off and couldn’t easily be removed from the tube. She and Nancy decided it would be OK to wait for more suction ‘till this morning when I got the broken piece out of the tubing with a needle nose pliers. Ann helped Nancy with bathing and with changing her colostomy appliance – thanks Ann; you were really a big help. Now, Nancy is sleeping soundly after getting fairly exhausted with her morning hygiene routine. While waiting to see if the MedResources people will come and get the suction going, I had the time to enter this post.

Nancy really appears comfortable and happy to be home – and we are thrilled to have her here. The minor mishaps that we are dealing with are well worth the opportunity to be together at home. Thank you to all who have been so supportive. Please keep us in your prayers. Plan “A” is working out quite nicely.

Numb3rs

Being the 4th of July, I imagined that we might not even get the opportunity to see one of Nancy's doctors today, but to my surprise we saw two of them, her surgeon and one of the oncologists in the group practice; both by 9:00 am this morning. The surgeon told us the CT scan didn't reveal much about the nature of the obstruction. However, he said there was significant tumor growth in the area of the obstruction and whether cancer was inside the intestine or just preventing the intestine from emptying, the cancer was the problem and the only way to relieve the obstruction was through surgery. However, he had already told us several days ago that didn't recommend surgery in her case because it is likely that due to the amount of cancer in the area, surgery wouldnt help either. If they opened her up and then had to close her, she would be going through all that trauma for nothing. In any case, Nancy had already decided that she didn't want to go through a surgery with only a small chance for success. One option eliminated.

The second doctor, the oncologist on call today, Dr. Abby, explained a little about the "numbers". He said if she goes home, even with the NG tube and equipment to decompress the intestine, she would be without IV fluids and unable to eat and drink. He said she would only last 4 or 5 days before passing away from dehydration. If she wants to keep IV fluids going, she could last several months, maybe more, but hospice won't work with her under those conditions. If she wants IV fluids, she would have to enter a nursing home for that treatment because the hospital would't keep her for just an NG tube and fluid replacement. So, just when Nancy thought she didn't have to make any more choices, she was handed the big one. After tears and some quiet time, she sent me home for a few hours so she could come to the point where she was ready to make that choice. This is one choice she has to make for herself. I am planning on going back to help support her in whatever she decides later in the afternoon. For now, I am going to do something physical (like cut the grass) to help me get ready for what is facing us.