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 Update #22 - From Jim Christ behind and before me, Christ beneath and above me, Christ with me and in me, Christ around and about me, Christ on my left and my right, Christ when I rise in the morning, Christ when I lie down at night, Christ in each heart that thinks of me, Christ in each mouth that speaks of me, Christ in each eye that sees me, Christ in each ear that hears me St. Patrick’s Breastplate It has been fifteen days since the Stem Cell Transplant and Janice is still hospitalized. It has gone something like this: August 3 - On Tuesday and Wednesday my mom drove Janice to Vanderbilt for the killer chemo treatments. Janice did well until Thursday when she woke with terrible heart burn. By the late afternoon she was feeling very nauseous but we chanced the drive to The UPS Store so Janice could make copies of a book proposal. While we where there I heard her softly call my name. I turned around to see my wife bent over the trash can by the copy machine heaving her cookies. And so it started. Friday, August 6th I took the day off to be with Janice for the Stem Cell Transplant. I realize now that this was the least eventful part of what turns out to be a very long hall. Step one: the nurse wheeling a cart into the stall where they performed the procedure. A steaming caldron holding three small bags of Janice’s frozen stem cells. Also on the cart was a stainless steal warmer which heated water to 40 degrees. Across from this cart was a table tended by another nurse who arranged three large syringes, vehicles for the transplant. Nurse #1 took the first frozen bag of cells, placed them in the warm water and massaged them until they reached a slushy consistency. After a quick handoff to nurse #2, the solution was sucked into the syringe which was passed off to nurse #3 who fed the stem cells back to Janice through her catheter. This was repeated two more times and within 15 minutes the transplant (what we had waited for over the last 9 months) was finished. It didn't hurt; it just made my dear wife very cold. They let her rest for about 30 minutes, observed her, making sure there were no problems then a volunteer transported her to an eleventh floor hospital room, a room that became her home for the next two weeks+. Even though the first fourteen days after a transplant are described as an "out patient" procedure, Dr. Jagasia was concerned by the difficulty Janice had keeping down any food. He said she could go home and try to "gut" it out on her own but recommended (based on 20 years of experience) that she remain under hospital care. If she felt better Monday, she could go home. I sat with her through most of Friday and watched as capable staff hung, hooked up, monitored, tapped and notated numerous IV’s: One for fluids, one for antibiotics (since her immune system was by now completely depleted), two bags to feed her intravenously, and what seemed like countless shots into her IV's of anti nausea medicine, anti anxiety medicine, and other things which I couldn't keep track of their names and functions. By mid afternoon, she was soundly asleep. Saturday, August 7th - 13th I returned to the hospital early Saturday morning to take Janice a few things for her hospital visit. I wasn’t whistling Dixie, I knew this process was tough, but when I arrived, I was shocked. She was hallucinating from the drugs. One minute she was lucid and the next she was talking about making tuna sandwiches and about friends we hadn't seen or heard from in years. More than once she complained about having a sore throat. This situation, we learned, was the beginning of an extraordinarily painful bout of mucositis. (blistering caused by the chemo affecting the mucus membranes in the patient's mouth, throat, down the esophagus and into the stomach. It causes severe irritation to the GI track, and is extremely painful). Janice couldn't think about eating anything, sipping water felt to her like battery acid being poured down her throat. As if that weren’t enough, her uncontrollable vomiting forced stomach acids up through the already inflamed and sore area.
It would take at least a tour bus to contain and cart away all the gruesome details; details that Janice suffered 24/7 but, thanks to morphine, will remember only in part. On Monday the 9th, her pain grew so severe that they put her on a morphine drip which they steadily increased through Tuesday the 17th. Our pastor came to sit and pray with her on Wednesday the 18th, and that night she and I talked about it, but it, along with much of her suffering soon slipped through a morphine sieve.
Through out all of this, the doctors and nurses assured us that everything she experienced was within a scale of “things to be expected.” All her vital signs were normal for the most part and they had seen worse! Sorry, but this "status quo" report did little to comfort my anxiety or Janice's pain.
August 14th & 15th
We were told that these "transplant" problems would begin to subside once the transplanted cells begin to graft. "Grafting" is a 7 to 14 day process during which transplanted blood cells begin to multiply on their own and counts climb towards normal, healthy levels. Being the "let's get this thing over" type of person that I am, I expected to walk in on Friday, day seven, and hear the nurse say Janice’s counts were rising and she was on the road to recovery. No, no tiny one! No grafting on day 7, nor day 8, just each day, more pain then on the day before. So they turned up the morphine drip, we waited.
On Saturday the 14th, when I arrived at her bed, Janice's face and cheeks were badly swollen, her lips looked like she had spent the last two weeks in the desert, her fever was up to 103 which was probably caused by the antibiotics, her breathing rattled, she could barely speak, and she had a Parkinson's like shake throughout her body. She looked up at me, when I walked in the room with a look that said, "I don't know if I can do this," and then she broke down and began to cry, and so did I. I stayed with her throughout the morning.
That evening our dear friend Craig was in Nashville on business and I brought him to see Janice. We saw none of the severe stuff I prepared him for. I couldn't believe the change. [Change at this point was relative, it meant she recognized people when they came in the room, she could carry on a brief conversation (that she would remember), she could wash her mouth out with soda water, and even swallow a little Sprite]. But on this evening, there was a change! Janice was fully with us for a nice, short, visit. We talked, watched a little of the Olympics together. Craig and I left, feeling better about it all; Janice remained and in a very short time, felt like Hell had hit a home run in her room.
For who knows why, the vomiting and diarrhea returned with a vengeance and sleep was virtually impossible. At 5:45am my phone rang and my wife asked if I could come to the hospital, “right now!” I did.
When I arrived, she was exhausted but I saw that a glint of determination had returned to her eyes. Doctor Jagasia came in with the first good news in nine days: her white blood count had moved from under .1 to a whapping .1 (10 is a normal count) and two of her other counts had improved. That morning she got out of bed, managed to walk twice around the hospital ward, took a shower, watched the Olympics, and washed her mouth out with more frequency. Her speech started improving (although she still sounded like she had a mouth full of marbles), but no one could miss the signs that she was improving. She got irritated with the hospital because they had run out of Sprite, she called me twice on my cell first while my mom and I were at lunch to tell us to go buy Sprite, and shortly after to find out what was taking so long. By the end of that day Sprite had been delivered and I began to breath a bit more easily.
Throughout that week Janice improved. Her counts rose to 2.4, to 3.9 then jumped to above 10. By Wednesday the 18th she was able to have visitors, could eat a few bites and actually drank some fluids. We started thinking she would be able to come home on Saturday the 21st.
But we are learning, the road home is one filled with one hairpin turn after another. On Thursday, things seemed to start going south. Severe pain in her stomach, renewed violent vomiting and diarrhea and growing disorientation slapped Janice back against a hospital pillow.
Friday morning after dropping my mom at the airport for her early flight home I drove directly to the hospital. When I walked in her room, Janice was completely unaware of my presence. I called her name and she didn't answer, I took her faced in my hands and spoke to her and she just stared at me. I asked her if she knew who I was and all I got was an uh huh, and then she closed her eyes and drifted off. When the doctors couldn't get a response from her, they sent up the infectious disease specialist to check for infection. Her only responses were cries of pain when pressure was applied to her stomach. By 10am there was no improvement and the entire staff was very concern. By 2pm, she was wheeled off for a CT scan.
Nothing appeared out of the ordinary except that her colon showed signs of being swollen which could be a result of the chemo or a sign of a more severe infection. They decided to watch her closely for a few hours to see if they could get anymore clarity on the problem and do a second CT Scan around 9pm to get a closer look at her colon. After her second scan I settled on a very uncomfortable lunge chair and Janice settled into a very disruptive night. Shortly after midnight (naturally, things in hospitals get talked about around the clock) surgical doctors came in to tell us that they felt there was no infection and they didn’t think surgery was needed.
Saturday? Change. Drastic change.
I ran home early to let the dog out, pet the cat, take a shower and grab a few things. I returned to the view of four doctors standing outside of Janice's room waiting for me. Dr. Diaz, the head of surgery, approached to let me know they had changed their diagnosis. They now felt that surgery was needed. He said they were concerned that her white counts had risen to 23 which seemed to indicate an infection, and (ready for this, I wasn’t) if they continued to wait and the infection got out of hand she could die. He stated that they would very possibly get inside her and find a serious infection and/ or a perforation of her colon. If that is what they found they would have to cut the infected section of her colon out to get rid of the infection and give her a colostomy, (an external bag to collect her waste). He also said to make sure I understood all the risks, that even with the surgery she still ran a chance of infection and that she very well had a 20% chance of not surviving. The doctor finished by saying he had explained everything to Janice and she was in so much pain that she wanted the surgery performed as quickly as possible.
Then he asked if I had any questions.
Did I have any questions?
How about this one doctor, "How do I face my wife knowing it’s possible that I may never speak to her again? Or, what do I say when I call my boys, Janice's mom, and my parents and let them know that their mother/ daughter/daughter-in-law is in grave danger and may not survive. Or, here’s one: how do I give my go ahead on something that may either save or end my beloved's life?
In a complete fog I asked a few trivial medical questions which, fortunately, I can't even remember. Dr. Diaz shook my hand and assured me they would do everything they could and he left.
As I walked into Janice's room I felt more alone then I ever had. She looked at me and began to cry, I had tears streaming down my face and found it very hard to look in her eyes. I sat by her bed, and rubbed her tender bald head. She looked at me and said, "I'm sorry."
"You have nothing to be sorry about," I said.
"Am I going to die," she asked.
"No," I cried.
Then I said, "I do think it would be a good idea to call the boys and your mom and have them come. Is that alright with you?"
"Yes," she said.
I think I remember walking out into the hall, I know I sat in an empty wheelchair, rocking myself back and forth, making a series of the hardest calls I have ever had to make in my life: First to Steve and Deb our dear friends, I explained the situation and said, "Could you please come." They were on their way. Next to Barb Pine to see if she and David could arrange the boys flights from Boston to Nashville; Then to Bobbie, Janice's mom, to give her the update; Then to my sister who would call my family; Then to a couple of other close friends to ask them to call others and ask them to pray.
Steve and Deb arrived, we all hugged and cried, prayed with Janice and they wheeled her down to surgery. Fortunately, the wait was short…and for good reasons rather than ill.
Less than two hours after I left Janice in the pre-op room, Dr. Diaz came out to the waiting area where four of us were seated (our friend John Marshall had joined us for the wait). He said they opened her up and found nothing but a swollen colon. No infection, her colon, stomach, liver, etc., etc., etc. seemed to be ok. As far as he could tell, her pain was caused by the stomach and colon reacting to the chemo and everything else she had been through. The recovery process, while extremely painful, seemed to be heading in the right direction. There was no perforation, no removal of the colon, no need to rough up her innards, no colostomy, just a 5 inch incision.
As I write this, I am sitting in Janice's room, after my second night of sleeping in a very bad vinyl recliner. Last night she slept fairly well, at 2am she woke up in extreme pain but was quickly quieted by an extra shot of morphine. This morning she has a temporary catheter and an SCD is Velcro-ed on each leg (this stimulates circulation since she has been immobile for 14 days). Lines are draped over her body monitoring her heart rate, blood-oxygen content, and blood pressure. Three to four IV's s-l-o-w-l-y drip saline, antibiotics, blood platelets, and morphine into her body. Bobbie is scheduled to arrive any minute and we begin a new day. There are no guarantees of what tomorrow holds, but for now she is out of danger, and Nurse Rae says she sees great improvement.
Before I end this update, let me jump back to August 7th, the second day Janice was in the hospital. After dropping her things off, I return home to find 17 men from my church, my prayer group, and other friends, at my house, cleaning up my yard, (which I might say hadn't had anything done to it except for when our friend Grant came to mow a few weeks back). These men mowed, weed-whacked, picked up debris, cut firewood, washed windows, mopped decks, clipped hedges, cleaned up flower beds and filled them with mulch. Then they hauled away a pile of junk I have been meaning to take to the dump for years, they finished by blowing clean all the drive and walk ways. While this was going on three women lovingly clean the inside of our house. So thank you to Dane, Al, Robert, Whit, Mark, Ed, Peter and his son JP and friend, David and his sons Justin and Michael, Peter, Don and his son Patrick, Simon and his staff, Marilyn, Nancy and Sue, please know, your love and hard work has touched our lives deeply.
Not surprisingly, that brings to my mind the outpouring of love, compassion, and help that has steadily arrived at our home and in our lives. We continue to be overwhelmed by such caring. Dozens of friends (to many to mention here, please know you are loved and appreciated) have cleaned our house, groomed our yard, driven Janice to the doctor, donated money for medical expenses, bought Janice a computer and a reclining chair, bought airplane tickets to transport family, prayed for us, visited us, brought food to feed us, came when we called, just to sit with us, and when needed, cry and laugh with us.
To each one of you who have physically been here for us and to those near and far who have added us to prayer lists, thought of us, encouraged us, worried for us, and have shouldered our burden through these devastating months, know that in you the Chaffee family sees a true image of the body of Christ.
With that, I opened with words from St. Patrick's Breastplate and I leave you with the words from a Twila Paris's song, because their message reminds me of each of you, these words (and melody) have been whirling around in my head and lifting my spirit for the past three weeks.
How beautiful the feet that bring The sound of good news and the love of the King How beautiful the hands that serve the wine and the bread and the sons of the earth
How beautiful, how beautiful, how beautiful, is the body of Christ
Thank you,
Jim
P.S. Remember, past updates can be found at www.janicechaffee.com . Also, for those interested in becoming a bone marrow donor, call the NMDP, National Marrow Donor Program, at 1-800-627-7692. Even if you and Janice don’t match, please consider doing for others what we’re hoping will be done for Janice. May we all be willing to serve and suffer in Jesus’ name. "All material, unless otherwise noted, are owned and copyrighted by Janice Chaffee and James Chaffee, © 2004, 2005, 2006. Permission is granted to forward e-mails, or print for personal use only. No portion of these updates may be quoted in part or whole in any published material or on any internet site without authorization from authors.” |
