Hopefully this time I'm home to stay

The date of my previous posting was the day I was initially discharged from the hospital (December 1st). I began to relapse with severe pain on Saturday afternoon shortly after my previous posting and an infection induced fever set-in by Sunday afternoon. Therefore, I was readmitted the evening of Sunday, December 2nd and spent a very long week in the hospital. I was re-released last night (12/9/07) and am hopefully now home to stay. The following journal entries provide some insight into what our lives have been like since going in for surgery on November 28th. For those who are interested in more medical details, you can check out this posting on my son Clayton's blog. (http://tinyurl.com/39jdgh) He is a 1st year medical student at Penn. State.

Hurry up and wait

Kim and I showed up right on time for our 6:15 morning check-in time on Thursday, November 29th at UCI Medical Center and immediately encountered a typical hurry up and wait situation. Even though we were apparently the first check-in of the day, we still had to wait. I eventually was called in to complete admittance paperwork and later the pre-op prep work, such as being fitted for the one-size-doesn’t-fit-all immodest gown and lying on the way-too-short gurney that caused my feet to bump against the nurses’ unmentionables as they struggled to reach around my feet and hold onto the gurney while steering me to the operating room. I was introduced to a parade of unfamiliar faces participating on the surgical and anesthesiologist teams. In response to my inquiries, the re-op nurses told me that the most painful part of the epidural would be the numbing prior to insertion of the narrow catheter. It did sting a bit, but was not as painful as I had feared. Kim was allowed to come back and say goodbye to me prior to going into surgery. I did not see Dr. Stamos prior to surgery. The first time I saw him was late Friday afternoon. He sent several assistants and residents to talk to me on Thursday and earlier in the day on Friday. His primary assistant, Dr. Smith, told us to plan on about a 3 hour surgery, which meant an 11:30am estimated completion time since I was taken into the O.R. at 8:30am. The only way I knew Dr. Stamos was in attendance during at least some of the surgery was that he used the first person singular when later describing what he did during the operation and the fact that family members told me that he was the one who came out of the operating room wearing scrubs to report how the operation had gone.

As successful as possible

Several family members and friends waited with Kim in the waiting room to give her moral support and to help take her mind off her worries. She began to get anxious after 11:30am. The clock struck 11:45am, then noon, then 12:15. Along about 12:30pm, Kim was relieved when Doctor Stamos exited from the O.R. to report that the operation was as successful as it possibly could have been. Due to the unusual shape and location of my sigmoid colon, he was able to reuse my appendectomy scar on my right lower abdomen (a zipper, if you will) through which to remove the colon rather than making a new incision on the left hand side. The only other incisions were two small laparoscopic access points. He reported that it did not appear to the naked eye that the tumor had breached the colon wall, neither was there any visible evidence of the cancer having spread to any of the 12 lymph nodes that were removed along with the 9 inches of large intestine. Of course conclusive results will not be available until the pathology lab work is complete on or about Tuesday. If the lymph node pathology turns out to be negative, its possible that my cancer staging might be downgraded from three to only one or two, which conceivably might not require any chemo treatments. Granted, this would be a best case scenario, but I am hopeful that the fasting and prayers of family and friends might be granted.

Zero on a scale from zero to ten

Even though I was groggy and weak following surgery, the epidural provided a pain free post-operative experience. When asked to rank my pain on a scale from 0 to 10, I consistently reported a value of zero. When I first tried to walk to the door of my room on Thursday night, I was anticipating being able to walk with only minimal problems, but was surprised that I had severe equilibrium problems which made it difficult to keep from tipping over from side to side unless I took very small half steps. I had remembered from my 1983 appendectomy surgery that hospitals are not conducive to rest and uninterrupted recuperation. This stay was no exception. Hospital workers come into the rooms every 30-45 minutes to wake up the patients to take vital signs, empty catheter bags, offer pain pills, change IV saline or medication bags, reset alarms on the metering pump units that are reporting that the current bag of medication its nearly empty so its time to order a new one, and housekeeping literally coming into the rooms at midnight to empty trashcans but forgetting to comply with repeated requests to refill empty antiseptic hand wash soap dispensers. I took advantage of some of these wakeup calls to walk the hallways to build up my strength and help restore normal bowel function needed before I could return home. The catheter was removed early Friday and the epidural was removed at 5pm on Friday and a single pain pill taken orally about 8pm. By Saturday morning, I was feeling fine, except for a very bland and boring liquid diet. Once I had the key bowel movement Saturday morning that was a prerequisite for going home, I pushed to be discharged from the hospital, which was granted Saturday around noon. I was feeling great. Before leaving, I ate my first solid meal since surgery. I was taken to the curb by wheelchair and Kim drove home carefully. On her way to the church to accompany some of her students at our Stake’s annual Crèche Community Christmas Celebration, Kim dropped off the prescription for the Vicodin pain relief medication. Everything seemed fine. Little did I know that this was the calm before the storm.

Tremble because of pain

After a few minutes of laying down to sleep, I began to experience increasing pain that was much stronger that anything I had felt with this operation or any of the procedures of the past few weeks. I tried unsuccessfully to find a position that provided some relief. I was writhing in pain. Each time my heart pulsed the pain would shoot throughout my abdomen, causing my abdominal muscles to involuntarily spasm with each heart beat in a futile attempt to protect my increasingly traumatized surgery wounds. As I recognized that I was trembling with pain each time my heart beat, I recalled the Lord’s words in the sixteenth through eighteenth verses of the nineteenth section of the Book of Doctrine and Covenants. “For behold, I God have suffered these things for all, that they might not suffer if they would repent. But if they would not repent, they must suffer even as I, which suffering caused myself, even God, the greatest of all, to tremble because of pain…” Even though it doesn’t take much to make me tremble with pain, this experience helped me gain a greater appreciation for the selfless love that motivated the atonement of Jesus Christ. As I desperately sought for relief, I tried to call Kim’s cell phone to tell her about the pain and to ask her to bring the Vicodin ASAP. I was dismayed to find out that Jayson, who was watching football in the living room, still had Kim’s phone, even though I had asked him several times to return it. I asked Jayson to give me a priesthood blessing, which he did. The blessing did not promise relief from the pain, but rather comfort in knowing that the Lord had already suffered everything I was feeling. The blessing provided the comfort I needed until Kim returned with the Vicodin, which eventually provided the desired pain relief.

Relapse

I was very surprised by the intensity of the pain I had experienced, especially considering how well I felt at the time I was discharged. Prior to the pain attack, I had been considering attending Sacrament Meeting and perhaps the Stake Choir’s performance at the Crèche on Sunday evening. Now I was spooked and thought it best to stay down and rest, which I did for the remainder of Saturday night and into Sunday. I slept on the couch because it was comfortable. Since the weather was unusually cold and the wall heaters in house still don’t work, several thick blankets were needed to stay warm. After she returned from teaching her Sunday School lesson the following day, Kim took note when I asked her to keep a window open because I was hot even without all the blankets still on me (usually she is the one who wants windows open). As afternoon turned to evening, she also noted that my face was looking red. She felt my face and said that I was warm. She took my temperature several times with our digital thermometer. The reported temperatures were in the range of 100.8 to 102.8. Kim re-read the discharge paperwork and learned that even a moderate fever was a reason to call the doctor, which she did. After he heard about my severe pain and my fluctuating temperature, the doctor “motivated” us to return to the hospital’s emergency room by saying that if the source of the fever wasn’t immediately treated, I might be wearing a colostomy bag the rest of my life. OK, he got my attention, but dang, I did NOT want to go back to the hospital, even for an emergency room “visit”. I had just escaped from there. Just to be on the safe side, I packed a bag. It turned out to be a good decision.

UCI Medical Center: Déjà vu all over again

The UCI Emergency Room turned out to be surprisingly empty for a weekend. The doctor had left word for him to be paged as soon as we arrived. In record time, we were filling out medical forms and I was giving my first of many samples of urine and blood. I was attended to by the O.R. nurses and doctors on duty. I was grateful when Steve Johnson (a close family friend and an assistant chairman of a pediatric ICU unit at an L.A. hospital) arrived to talk to Kim and I. His good company was welcome, but his medical expertise and instant 2nd opinions on UCI’s proposed treatment plans was even more appreciated and helped reassure Kim and I that the right choices and treatments were being made. I was admitted into private room 5017, because they told us that all semi-private rooms were already occupied. They scheduled me for another CAT Scan later than night and started me on antibiotics, and re-hydration fluids by IV, as well as an on-demand morphine pain management solution. Even though the scan was scheduled for 9pm, it did not actually occur until 3am due to higher priority trauma patients. After he had a chance to review the results of the scan, Dr. Stamos said that the scan showed some air under the diaphragm and down around the section of the colon that was reconnected, but no obvious or blatant leaks of the contrast liquid I'd been drinking. However, he surmises that there might be a pin hole leak in the colon that is allowing air and small amounts of digestive tract contamination to enter the abdominal cavity. His plan is to continue to treat the fever (and presumed infection) with antibiotics, to put me on complete digestive tract rest that requires abstaining from food, liquids, and oral medications for the rest of the week to see if the bowel will heal itself before deciding whether follow-up surgery is needed. I am to receive essential nutrients, amino acids, and other nourishment directly into the blood stream, along with medication to prevent my empty stomach from eating at itself and forming ulcers.

Journal Entry for Thursday December 6, 2007

Today Dr. Stamos decided to move up my planned CAT Scan by one day to today rather than tomorrow. The nurses here at UCI hospital have already started me drinking the regimens of contrast solution. The scan was requested for 4pm (in about 4-1/2 hours), but will also depend on the demand for CatScan services by Trauma Center patients. If all goes well, they should restore me to a liquid diet today and hopefully a solid diet by tomorrow morning. Hopefully I can then be released by tomorrow’s 11am discharge time.

During a talk with my father on the phone today, he confided that both he and his brother Vince have problems with their blood, not unlike their father who eventually died of leukemia when he was eighty years old. I believe that my father said that his platelet count is high and that my uncle has a high red blood cell count. Both of these could develop into leukemia if left untreated. They both take what amounts to daily chemo pills in an attempt to kill or limit the number of red blood cells and keep the number within a range of values, as well as have their blood checked weekly (or monthly in my uncle's case) to verify that the treatment does not over correct and kill too many red blood cells.

Dad asked whether the rumor was true that Jayson is engaged to be married. I told him it was and gave him a few of the details, such as a mid-March date. I also told him about Judd & Michele’s upcoming wedding the end of this month.

Journal Entry for Friday December 7, 2007

The CAT Scan taken yesterday shows about a 50% reduction of “air” around the surgery site compared with the scans taken early Monday morning after I was readmitted. This was incremental improvement, but less than had been hoped for. I spoke with Doctors Root, Smith, and Stamos this morning about my treatment plan. They each recommended somewhat different plans. Doctor Root suggested sending me home soon (maybe today) with supplies to continue IV feedings at home while the pinhole leak in the colon continues to heal itself. Dr. Smith recommended putting me on a liquid diet for several days and then switch to a solid diet if all goes well, with a possible release date of early next week. Dr. Stamos (who leaves on vacation next Monday) has agreed (pending verification of no surprises in the results of the blood work drawn this morning) to discontinue the daily blood thinner shots, put me on solid food right away, and discontinue the IV feedings. We also discussed possible chemotherapy options and potential benefits. They agreed to have one of the UCI oncologists come talk to be and give me their recommendations. My cancer has been typed as Stage IIA: T3 N0 MX. Since both the cancerous polyp and the tumor itself have been removed, along with 35 lymph nodes that have all been certified as being cancer free, I should technically be cancer free. Chemo should not be required, but would only be optional to further decrease the chances of any reoccurrence. Dr. Holcombe (http://tinyurl.com/2rkl9u) visited with me in my hospital room and basically told me that the cure rates for someone with Stage 2 colon cancer was about 80-85% without chemo and that the chances increased about 3% to 83-88% with chemo. He admitted that 3% didn't seem like much of an increase, unless you happen to be those 3 people out of 100 whose prognosis switches from death to cured due to the chemo treatment. I've received advice from multiple people who are either against or for submitting to chemo. Definitely something to think about. Dr. Holcome said to come talk to him sometime between 1-2 months following my surgery.

Here is a photo of a few of the many visitors I had while in the hospital. I am very grateful to all those who made the effort to visit me, especially those who came to visit and found me already checked out.