The Last Day

Late this morning, Nancy finally ended her struggle with cancer. She passed away at home, where she was most comfortable, with the hospice nurse and a very sweet health care aid by her side. I, and our children, arrived home shortly after she passed away. I believe that Nancy chose to leave us when we all out of the room, but close enough to say goodbye once more after the machines were silenced and the tubes removed.

Visitation will be at Schrader Funeral Home - (636) 227-5511 - 14960 Manchester Rd, Ballwin, MO from 3:00 p.m. until 8:00 p.m. on Friday, July 27, 2007.

At this time, we are planning to have the funeral service at St. John United Church of Christ at 11:00 a.m. on Saturday July 28, 2007. If the time of the service changes, I will enter an update to this blog. The obituary will probably be in the Thursday newspaper.

I would like to thank everyone for your continued support with comments, cards, flowers, visits and prayers. Nancy was never in any pain – even at the very end. To me, that is God’s greatest blessing for Nancy.

A Wider Gap

Today we met Annie Ellison, the Health Care Aid that will be staying with Nancy for 6 hours each day this week. To me, she seems wonderful. It doesn’t take long to realize that Annie has a deep respect for human dignity and wants nothing more than to make Nancy feel comfortable and me to feel at ease, knowing that Nancy will be in good hands while I am away working at the university. Nancy said that she didn’t want someone who was “chatty” because that might make it difficult for her to rest. I think Annie is a little chatty, but if she is, that doesn’t seem to bother Nancy. The compassion that exudes from Annie disarms you and is very comforting. I am certain that Annie was the perfect match for us.

The hospice nurse, Janet, visited today and was concerned that Nancy is still getting too much fluid, or that she isn’t getting rid of as much as she did when she first started hospice care. I agree that Nancy's limbs seem very puffy and tight, much the same as they did when Nancy was pregnant with our kids over 20 years ago. Nancy’s IV fluids have been reduced again and Nancy is now also getting oxygen because her breathing is becoming labored. I feel that slowly, the gap is widening -- Nancy is slipping away from us -- and closer to God.

I really don’t want what I am about to write to sound insensitive, because I think the story I want to tell you is rather touching. Last night, I woke at about 2:00 a.m. with the sounds Nancy makes when she is searching for something with her hands on the tray beside her bed. I turned on a light to assist her – only to find that she was apparently having a dream and during it, she removed her colostomy bag and now its contents were spread all over her hands, her nightgown and the bedding. When she woke up enough to realize what had happened, she tried to tell me how sorry she was for making such a mess. I tried to reassure her that it would be OK; I knew I could clean her and her bedding easily enough, but I was more than a little nervous about not knowing how to replace her colostomy bag. Even though she had replaced it close to a hundred times since the surgery that required it, her hands don’t work well enough now to do it herself and she is having so much trouble communicating, I didn’t know if she would be able to “walk me through” it. Most of the supplies for bag changing were next to the bed in a small black zipper-bag that she usually carried with her when she was away from home. However, she knew there were additional required items required that were unintentionally “hidden” in several locations in our bathroom. The next half hour felt like a combination of a game of charades and putting together unassembled furniture with the instructions translated badly from Chinese. If the subject matter hadn't been so sensitive, our comedy routine could have been part of an "I Love Lucy" show. I eventually found the missing supplies and we stumbled through the bag change... but we did get the job done! When it was all over, we both laughed and hugged. Nancy felt good that she was still able to teach and I felt relieved that we had succeeded in completing a task with which I was never very comfortable. Following that event, even with my lack of sleep, the day seemed bright and full of promise. Although I know that Nancy isn’t going to regain her health, it helps me to know that there are still highlights for her to enjoy.

In your comments to this blog, several of you have recounted a touching moment or funny story that reminded you of a happier time for Nancy with you. Now I am asking for more of those stories. Please e-mail your stories to me at the following e-mail address: eetman@yahoo.com. Thanks, I know it will bring Nancy some joy to know that you carry fond memories of her.

... and Another

This weekend was supposed to be a highlight for Nancy, with her Dad, her brother and his family coming for a visit. Unfortunately, early yesterday morning, about 2:30 a.m., Nancy had a seizure. It wasn't a long seizure -- maybe only a minute or less, but there was no mistaking the signs... it was a seizure. I was afraid that the seizure would last a long time, but it didn't. Initially, I could tell Nancy was frightened and she felt anxious. I tried to assure her that I was by her side and that she was OK. After spending a little time trying to calm her, I realized that she didn't really respond to my words except to open her eyes each time I called her name. At this point, I phoned the hospice night call number and was told there would be a visit from the "on call" nurse within an hour. By the time the nurse, Peg, arrived with a companion, Nancy was responding a little more than immediately after the seizure -- but her responses were still weak and confused. I was relieved to find that Nancy didn't remember that she had a seizure. In fact, each time I told her, she didn't remember that she was told about the seizure before either. Peg said that Nancy was following a typical pattern of post-seizure behavior. After speaking with Nancy's oncologist, Dr. VanAmburg, who just happened to be on call for the weekend, Peg started Nancy on lorazapam, a benzodiazapine that is often prescribed for anxiety. She said it could help prevent a future seizure, but other medication would be available on Monday should this prove inadequate. Peg and her assistant helped me a lot by teaching me some tricks to work with Nancy now that she was less responsive and may not be able to get out of bed. Those hospice nurses are great. When the nurse left, the house was quiet again. Nancy seemed to be resting and totally unaffected by the recent string of events.

I don't think I slept after that because sleep was the last thing I felt I could do at that point.

Later, Amy & Henry picked up our niece, Becky, at the airport at 9:00 a.m. and brought her over to the house. Nancy was starting to feel a little more awake and spoke with Becky, as well as she could. I realized that there had been a definite change in Nancy's ability to communicate, when compared to before the seizure. Nancy's short term memory seemed to be limited and she failed to remember more words for things that she wanted me to bring her or do for her. I could tell she was frustrated by this and I began to worry that if this trend continued, soon I would be unable to understand what Nancy wanted and needed by relying on the things she said.

By lunchtime, Nancy's Dad, her brother Dick, her sister-in-law, Sharon and their son, Andy arrived by car from the Chicago area. Everyone was sad that Nancy seemed to be having so much trouble communicating, but we all tried to support her and offer suggestions when the words she searched for were not the words she wanted to use.

Nancy is now definitely unable to get up anymore. She hardly has enough strength in her arms to pick up a drink glass and bring it to her mouth. All of her personal hygiene activities must now be attended to while she remains in the hospital bed. I had to inform the home health care agency of this change so they would be prepared when they arrive tomorrow morning to stay with Nancy while I am at work. At one point, I made everyone leave the room while I changed Nancy's bedding and attended to some of her hygiene needs and I realized that just these simple activities really tired Nancy out. However, when I asked her if she wanted to rest -- and for me to keep everyone away while she rested -- she said, "No, I want them back." That response was a pleasant surprise for me to hear and it let me know that even though the post-seizure decline and her new medicine would make communication more difficult, Nancy was still happy to have her extended family around her and she didn't want to miss spending this time with them.

The rest of the family, Ryan & Kelly, arrived before dinner and Nancy got plenty of time to visit with everyone. After dinner, the young people left to see Ryan & Kelly's loft downtown and to visit the City Museum, where Kelly is doing her summer internship. The rest of us (older folks) visited with Nancy and each other and then went to bed at a reasonable hour -- in contrast to the much later time our kids would be in bed. No more seizures in the night... yea!

Nancy's family left today, a little after noon. While they were here, they not only visited with Nancy, but they helped me with some of the "around home" chores -- Dick helped by spreading insecticide on the lawn and running errands. Sharon helped around the kitchen and with the laundry. Everybody else helped with food preparation, clean-up and by keeping Nancy company and bringing some happiness to her day.

Kelly's friend and former roommate, Ellen, came to visit this afternoon and they are now planning on visiting Doug and some of their other friends for the remainder of the day. I told Kelly that I remember something I hadn't thought about since our kids were small. That is, when your kids take a nap, you need to take one too. Don't try to clean or organize or catch up on other work. Take a nap -- you will need your strength for when they awake. Now, I realize that I am a little tired so I think I will take a nap -- along with Nancy.

Taking the Next Step

Well, today is the last day I will be relying on friends to stay with Nancy while I am at work. Owen DeBoer, who stayed with Nancy early this morning, noted that I have to help Nancy with just about every move she makes -- for performing even the simplest of tasks... like standing up and turning around or changing her position in the bed. On Monday, we will begin having assistance from a "health care aid" named Annie Ellison, who will be here every weekday from 8 am 'till 2 pm to help Nancy with daily care needs. Having Annie here for 6 hours a day will give me enough time to get work done at the university and still have some quality time at home with Nancy each day. Our neighbor, Janny told me that she could be here for awhile before Annie gets here if I would need a little extra time at work on any given day.

Nancy's regular hospice nurse, Janet, phoned me at work this morning to let me know that Nancy may now be overloaded with fluid after having been dehydrated for so long. Getting this fluid thing right without lab tests is really an inexact science. Janet said Nancy's tissues were puffy and appeared to be getting some edema -- especially in her ankles -- although Nancy hasn't complained of any discomfort. So, we are now reducing Nancy's IV rate somewhat to correct the problem. We are making several little "care-related" changes in Nancy's daily care routine as we find that they help her be more comfortable as her strength decreases. The hospice philosophy of doing what is necessary for the comfort of the patient instead of treating the disease makes more sense after all the "treatments" have become ineffective.

Thanks to our friends, John and Anita Reger, that big limb that fell out of our backyard maple tree in Tuesday's windstorm is now useful firewood. Anita called me after hearing that my chainsaw refused to cut the limb and offered the assistance of her husband, John and herself along with their newly repaired chainsaw to cut up the limb. With their help, it didn't take long to cut up that 20 foot, limb that was about 6 inches in diameter at its thickest part. Since we don't use our fireplace anymore, and they don't have one of their own, they offered to haul off the wood for Anita's sister's fireplace. Not only do they make service calls, they haul out the debris as well. Thanks.

Nancy and I are looking forward to a visit by her Dad, her brother Dick and his family this weekend. We feel blessed to have the love of so many friends and family who have offered to share their time and talents to help us through this difficult time. It is with your generous help that we are able to keep going on with such a positive attitude. Thank you all.

Just Keeping Up

Here is a picture of me as I sit with the computer and enter new information into this blog... with Cricket at my side. It's hard to tell Cricket's head end from her tail end in this shot because she is so dark. Nancy's "Home Health Aid" calls her the "rocket" because Cricket has so much energy that she darts from place to place with amazing speed. Cricket is about 5 lb now and all puppy. We have to wear her out before placing her on Nancy's bed or she will jump like a kangaroo all over Nancy. We all love her though. Her antics bring great joy to Nancy's otherwise often uneventful days.

I think we may have come close to the point where Nancy isn't battling dehydration in addition to the cancer. The IV fluids have been increased gradually until Nancy seems less thirsty and her blood pressure and heart rate suggest that her hydration is better.

As Nancy is becoming weaker with the passing time, I have inquired about adding a daytime Nurse's Aid to cover my absence from 7 a.m. to 1 p.m. during the weekdays. It has been great having friends and family members staying with Nancy while I am working, but with Nancy becoming less able to stand and move about, I don't want to ask friends and family to feel anxious or uncomfortable in caring for her. If we get all the arrangements made today or tomorrow, that Aid will start on Monday. Funny, but the first caveat offered by our Hospice social worker, who is arranging this extra help, was to let me know that personalities being what they are, I shouldn't be embarrassed to let the agency know if Nancy and the Aid don't get along. Apparently, it often takes a couple of tries to get a good match. Oh, what fun!

I will not be going to work today since our friend, Diane Tilton, who was going to stay with Nancy today had an unexpected family illness to attend to. However, before leaving work on any given day, I make sure that I will have things to work on at home, should this sort of thing happen. Besides, I could use a little extra daylight time to prepare the house for our 5 house guests that will be here for the weekend... I still haven't tackled that big tree limb that fell in our windstorm on Tuesday. Nancy's Dad, her brother Dick and his wife Sharon along with our niece, Becky and nephew, Andy will arrive on Saturday. Fortunately, I am all caught up on laundry with plenty of clean bedding and towels for everyone. It is good that Nancy has this family event to look forward to this weekend.

"... watch out for that tree"

I just thought I would include a photo of the tree limb that fell directly where people had been sitting last night at the Commitment Ceremony. I am now happy that we were blessed with an abundance of heat for the ceremony -- rather than encountering a strong wind like the one that dislodged this tree limb from high atop the large Maple tree in our yard.

Commitment Ceremony

I promised I would put some photos on this site showing the Commitment Ceremony from last night. I will add some more details later but I wanted people to see these when they viewed the blog.


Yesterday was such a special day for Nancy and for both the Stephenson and Richter families. Thanks to Sue Valentine and Carol Kolar, a very intimate and classy Commitment Ceremony Reception was prepared and everything was perfect.

Thanks to everyone who sent flowers and best wishes to the young couple. Although I have posted a few pictures of the ceremony and post-ceremony festivities, Kelly and Doug mentioned that they were planning this event to their wedding photographer when they had their engagement pictures taken last Friday. Mark, of Anmar Photography, offered to come out to the house to take a few pictures so they would have this extra special ceremony as a part of their wedding album. Well, Mark may call 360 pictures a "few" but that seems quite allot to me. Mark took the pictures at Amy's wedding last October and we all were very pleased with the results -- and we really like the way Mark gets all the good shots but never seems to be "intrusive". We are anxious to see how he captured the sensitive emotions and exuberance of the evening.

The ceremony was outside, so that meant getting Nancy dressed, make-up included, and into a wheelchair for a trip to the backyard patio for a 20-25 minute ceremony. Nancy hasn't had to get dressed for quite awhile, but she was determined to be a part of this event -- no matter how exhausted she got during her participation. The ceremony was beautiful. Kelly had burned some CDs earlier in the day for some light music to accompany the ceremony. As you can see in the photo, Nancy & I were on the patio (near the patio door) and Doug's parents were beside us. Rev. Janet Pillman put together a beautiful and meaningful ceremony describing how this commitment was just a beginning for the couple. There were vows of commitment and Rev. Pillman included some pertinent and meaningful scripture readings as well as a special ritual in which each person attending the ceremony passed around an object that had special meaning for Doug and Kelly. While holding the object, we were asked to ponder the meaning of Doug and Kelly's commitment and to offer a silent prayer for them. The object was a "snow globe" that was the first gift Doug gave to Kelly when they were sophomores in high school. That present had even greater meaning for Kelly because it also played music, "Edelweiss", a song that Nancy and I sang to all our children before they went to sleep as infants and toddlers.

Although the weather was beautifully clear, it was hot. There was a welcome breeze once and awhile but Nancy was definitely exhausted and ready to be back in bed as the ceremony concluded. We all (even Nancy) shared a champagne toast to the couple, enjoyed some very tasty food and then topped off the evening with that beautiful Commitment Cake from Party Pastries. Unfortunately, Nancy only got the champagne and she didn't like it that much... back to Gatorade, Popsicles, Coke and other clear liquids. Thanks to all of the family members who endured the heat to celebrate this special event with Doug and Kelly. I don't think any of us would have missed seeing how much meaning this ceremony had for Nancy and Kelly.

Today, we had a quick storm pass through just after noon while I was visiting with Carol Kolar -- just before she returned home to the Chicago area. The winds picked up, a little rain fell, and then it was all over. In my peripheral vision I thought I had seen something move outside the patio door, but it didn't register that the object was something big. Later I looked outside to see a very large branch on the ground, right where family members had been sitting just last evening. I am so happy that branch didn't fall last evening when one of those breezes came through. The weight of that branch could have posed a serious health hazard to the people sitting under that tree.

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.

Fourth of July "Eve"

You know, timing is everything -- or nothing. I really thought things would move well today when we saw Nancy's surgeon, oncologist and gastroenterologist all before 9:00 am. The only test ordered was by the surgeon who saw Nancy at about 6:00 am this morning. He wanted to be sure that nothing was moving through the obstruction before clearing Nancy for going home. All of the doctors agreed that the only options available for Nancy to resolve the intestinal obstruction were surgical -- and none of those options was good. The doctors felt they had to offer them to Nancy, but did so with arguments as to why the options were poor. Nancy didn't want to have any more surgery anyway, so, the only options were to decide where Nancy would spend the rest of her time. She wants to go home. The problem is that for Nancy to go home, a lot of stuff has to get done and with the CT scan not being done 'till the middle of the afternoon, all preparations for her return home ended until Thursday -- after the holiday!

That is too bad because all Nancy wants now is to go home, eat popsicles and let her puppy sit on her lap. Popsicles have become the big joke with all Nancy's visitors because with not having eaten any solid food since June 22, she was pretty sure that she wanted something to eat and that would be a popsicle. At one point, on her first visit to the hospital for this obstruction, last week, her surgeon said she could have a popsicle. However, he failed to write orders for that offhand statement. When Nancy was told by her nurse that to receive a popsicle, the surgeon would have to write the order, Nancy made sure every nurse or PCT (patient care technician) that entered the room heard of her displeasure with the surgeon. Well, today ( a new week and no written orders for a popsicle), thanks to our friend Sue Valentine, the hospital rebel, who knew where the nurses kept the popsicles and wasn't afraid to smuggle one to Nancy, Nancy's afternoon was a little brighter. Shortly after Sue left, we thought the sugar police were going to discover the evidence because they were checking Nancy's blood sugar and getting unexpected results. However, Nancy's blood sugar was actually too low after the popsicle & our secret was safe. Thanks Sue. Later in the afternoon, we encouraged a PCT to steal another one from the nurses stash for Nancy. After all, Nancy's blood sugar was too low (85 mg/dl - for those who want the numbers).

So the bottom line is that Nancy will have to spend the 4th in the hospital. I though about bringing bottle rockets to shoot across to the nurses station, but we decided that wouldn't be a good idea -- too much noise for the rest of the patients -- and you know, there is that risk of fire. Unless something fun happens tomorrow, I won't have much to enter into this blog until Thursday -- when the staff returns to the hospital and people actually work at their jobs again.

Medical Options are Dwindling for Nancy

I wish I had begun this blog sooner so I could have started it with more encouraging news and to get the word out to more people before things started getting as bad as it seems they are now for Nancy's health. Nancy is still in the hospital with the GI obstruction. Although there is still some debate as to the reason for the obstruction, her oncologist, the GI specialist and her surgeon all feel that there is little that can be done to correct the problem -- without subjecting Nancy to undue surgical trauma. They are doing a CT scan today to determine whether they can get a better handle on where the bowel is obstructed. If the obstruction is near the stomach, there is a possibility that she could have the NG tube removed and a gastric tube inserted through the abdominal wall. The plain film x-rays didn't reveal much about the location of the obstruction -- probably because of the volume of tumor surrounding the obstruction and obscuring the x-ray view of that area. I expect we will have a better handle on the limited options available to Nancy later today.

However, even if the gastric tube is possible, the GI specialist suggested it may not work nearly as well as the NG tube at preventing GI distension, nausea and vomiting (symptoms she was trying stop by having the medical professionals do their best). The gastric tube is just an option that would allow her to have the NG tube removed. With the NG tube or the gastric tube, Nancy still would not be getting sufficient nutrition because without removal of the obstruction, food can't pass through the intestine. Regardless of the CT scan, Nancy has indicated that she will probably choose to just go home with the NG tube (which which she is doing pretty well) and get some home nursing assistance to allow her to continue a little while longer. I will post another entry sometime latter today with more information.

Back to St. Luke's Hospital

July 2 -- Well, Nancy is back in the hospital today. After working nearly all last week to resolve the blockage in her intestine, the problem is just as it was last Monday -- well, maybe not quite as bad. After looking at the x-rays of her obstruction, her doctors decided to repeat the procedure they used last week to empty her GI tract. So, Nancy had to endure another NG-tube placement. She is such a good patient though, she just tries real hard to do what she is asked. So, right now (9:00pm) she is resting comfortably, watching the St. Louis Cardinal vs Arizona Diamondback baseball game on FSN-Midwest. Since we don't have cable at home, and Nancy has become quite the Cardinal's fan, the baseball game was her choice for TV viewing this evening.

The new wrinkle in this hospital stay is that her doctors no longer believe that just decompressing the abdomen with suction on the NG-tube will allow the blockage to resolve itself. Now they are talking about the possibility of surgery -- maybe making a very small incision and using the laproscope to see what is going on in her abdomen and only then will they make a decision as to whether to go ahead with what could be a fairly major surgery. On the other hand, they may not even want to take the chance of making her more uncomfortable with the laproscopic procedure. We really have to wait to talk about those options when the surgeon stops by tomorrow. Nancy's oncologist really can't make surgical decisions. That being said, her oncologist did tell her that if surgery isn't an option, there may be very little that can be done to improve her prognosis. That hit her pretty hard at first. However, after some tears -- by both of us, she seemed almost relieved that the "end of life" subject had been brought up. She didn't want to hear it -- and I still don't think she believes that she is there yet, and hopefully she isn't -- but it was good to at least have the subject brought up frankly by a doctor she respects very much.

I stopped home to have something to eat and to let our 4 month old poodle puppy, Cricket, out but Kelly had stayed home tonight so I was off the hook on taking Cricket out. While home, I grabbed a box of "Puffs with lotion tissues" to take back to Nan. If there is any significant crying ahead, we ought to have better tissues than the ones provided by the hospital. Those things could give you second degree abraisions by just rubbing them on your nose!

Well, I will add more news tomorrow after we discuss options with her surgeon.

Time to "Catch UP"

July 1 -- I really wanted to start this blog to give people the opportunity to find out how Nancy is doing without having to wait for a phone call from me or to call me to get the information -- not that I don't enjoy talking to people; your phone calls are always welcome. Our good friend (and Ryan's Mother-In-Law) Sue Valentine had done this with her husband, Bob after learning of his pancreatic cancer and it seemed to be a real good way to get the word out efficiently.

Nancy isn't doing so well, right now. For those of you who don't know how she has been doing lately, she was diagnosed with metastatic disease to the brain just before Memorial Day. It really hurt her to be unable to finish teaching during the last week or so of school. However, the inflammation from the tumors that were growing in her brain made it impossible to concentrate well enough to continue teaching. Nancy has been receiving whole head radiation (13 treatments) because there were multiple brain metastases and therefore surgery or focused radiation were not possible. Those treatments were completed about two weeks ago.

Just when we thought Nancy would be getting some time to recover from the fatigue associated with this type of radiation, she started feeling GI pain and was diagnosed with an intestinal blockage that resulted in a stay at St. Luke's hospital lasting most of last week.

After sucking most of her stomach and intestinal contents out through an NG (naso-gastric) tube, her doctors thought she might be doing OK, that the obstruction may have resolved itself. She was also severely anemic so they gave her 2 units of blood and sent her home on Friday with a bland diet containing no seeds, nuts, berry or vegetable "skins"-- and just about anything else that might get stuck in a "narrower than normal" intestine -- or taste good. Now I think the blockage is back (because she can't even keep jello down) so we will call the oncologist back tomorrow morning and I expect she will be back in the hospital before noon.

Also, while examining the x-rays taken to check on the intestinal blockage, her oncologist told me they noticed the metastatic tumors in her lung have increased significantly in size -- possibly as a result of the steroids she must take for the brain swelling and edema (due to the radiation treatments). Sometimes treating one "life threating" medical problem raises the "life threatening" potential of another ongoing medical problem, like Nancy's lung tumors. This cancer stuff really sucks!

Nancy is a real trooper though. She doesn't complain and still looks for the "silver lining" in almost every situation. She can often be overheard saying, "I am so lucky" when referring to all the support she gets from family and friends. Thank you , to everyone who has said a prayer, sent a card or stopped by with encouraging words. They mean everything to us right now.

Enough doom and gloom. I hope you all have a great 4th of July and enjoy every minute of your holiday. As I have learned over the last four years, "nobody is promised tomorrow, so live each day as if it was your last." That has been Nancy's mantra since her diagnosis of stage IV colon cancer three years ago -- and she has really tried to live by the spirit of that sentiment.