Via her mother's journal
Courage is being scared to death but saddling up anyway. - John Wayne
If you have never accessed this page before, and wish to read the updates in chronological order, you will have to start at the bottom. The newest information is at the top of the page, because most visitors are friends and family, who frequently access this page.
can only be understood backwards; but it must be lived forwards.
"December is the toughest month of the year. Others are July, January, September, April, November, May, March, June, October, August, and February." Mark Twain
December 30, 2003
We made very good time today. We didn't leave Sumter until 6:15, even stopping for gas, we still made it to Charleston before 8:00. There wasn't any backed up traffic on I-26 this morning. Maybe a lot of people are on vacation because of it being the week between Christmas and New Years.
Missy had to be at the Rutledge Tower labs at 8:00 this morning to have blood work done for her 8:30 appointment with Dr. Stuart. It was Bonnie, his clinic nurse's first day back from her mystery surgery. She was looking well. Missy's white count was 4,000. Dr. Stuart was pleased. He was also pleased with the sound of her bad left lung. He said that it sounded a lot better. He said that her platelets are a bit low, but not too low. He didn't give us a print out of her lab results as they usually do. He said that he forgot to print them out. They send it from the 1st floor via the computer system. He gave her a new coumadin prescription. This one is for 5 mg, once per day. She had been on 3 mg. He said to continue the lovenox. He wants the catheter area all healed up before doing the transplant. The blood clot problem area and all. I asked him what they will do for a catheter for the transplant. He said that they will put one in, but it won't be o big. The catheter for the pheresis is very inflexible and large. They will get one in for the high dose chemo and transplant that isn't so big and troublesome. They will put in a catheter that is more flexible, so she will tolerate it better.
He also gave her orders for blood work to be done in a week at Dr. Clowney's office, to be faxed back to him in Charleston.
He asked Missy how she had done after the gemcitabine. She told him a little nausea and that Christmas dinner had tasted like eating pennies. (She had that metallic taste that folks get from chemo in her mouth.) He gave her an appointment to come back in two weeks, on January 13. He said that they probably would not do any chemo on that day but that he would schedule her in the day clinic just in case. (It's easier to have a spot if needed and cancel it than it is to work someone in.) On the 13th, he will check her over for the transplant, but from how she seems now, he says that it may be her last clinic visit before the transplant. I asked him whether she needed to come packed or not. He said no, that they would send her home, and that the bone marrow transplant team coordinator would get everything set up and scheduled and that they would call when it was time for her to come back, but that it would be soon after that checkup. I would guess that it will be when a bed is available, some time during that week. Beds are very tight in the bone marrow transplant unit. Everything depends of course on there being no complications between now and then.
He sent her over to the chemo day clinic to have chemo again. It was gemcitabine again because you can't get navelbine if you don't have a port. (The plan had been gemcitabine, then a week later, navelbine, but that was before her port had to be removed.) Before the gemcitabine was started she received Dexamethasone and Ondansetron (Zofran). The nurse said they were for nausea. They didn't put her in the private little room this time. She must have been put in there last time because she was so tired and had been sick with a fever the night before. She was in a room with lots of recliners and other folks getting chemo. Everyone was watching TV, reading, or sleeping. Oh, one family was arguing. (Wife needing chemo, husband, and grown daughter.) Bruce and I took turns staying. I went to the pharmacy to get her new prescription for coumadin and then across the street to the Eckerds to get some eye drops. (The MUSC pharmacy isn't a big retail drug store like everyone is used to. They have a prescription counter and that is it.)
When she was ready to go, she didn't feel dizzy and nauseated like she did a week ago. She felt fine and wanted to go out to eat. We stopped at a Cracker Barrel in North Charleston. That didn't last forever though, because by the time that we stopped to pick the boys up from my mother's house, she said that she was feeling sort of woozy. She and Bruce stayed in the car and we went straight home. When we got home, she went straight upstairs to her bed to take a nap.
So, next the appointment is at 9:30 on January 13, 2004. A new year, a new beginning. Elena, the MUSC social worker had estimated that the transplant phase would begin sometime that week.
"Courage is the art of being the only one who knows you're scared to death." - Harold Wilson (1916 - 1995)
December 22, 2003 & December 23, 2003 - Tuomey Emergency Room Saga and trip to Charleston
Missy took a nap late this afternoon. She said that her chest and stomach hurt. I'm glad that she has an appointment tomorrow, so that she can let Dr. Stuart know how she feels. She got up from her nap to eat supper. Once everyone had finished eating, Missy still sat at the table. I noticed that she had just sort of pushed her food around on her plate, not really eating it. She asked me to feel her head because she felt hot. I did and then found the thermometer. Her temperature was 101.5, so I called the bone marrow transplant center emergency number. Christine Schaub, the nurse practitioner was on call. She called back at 7:01. She said that I should take Missy to the emergency room to be checked over. She said that the emergency room doctor could call the fellow on call at MUSC as needed and he could get in touch with Dr. Stuart.
When we got to the parking lot of the emergency room at Tuomey, there wasn't a parking space to be found. I let Missy out at the door and circled the lot, looking for someone pulling out. I was lucky; I saw a lady coming out of the door and followed her to her car, let her pull out, and got her space. When I got into the emergency room, Missy was in line at the check in desk. When it was our turn, I told the woman there the situation. I asked her if there was someplace that Missy could sit, away from all the people with germs and flu. She just sort of laughed at me and the security guard standing there did too, but I was serious. I don't think that she understood how much of a problem it would be if Missy caught the flu. She said that she could give her a mask. So, she gave Missy a mask, and we took a seat.
At 8:05, we were still waiting. Bruce got there. He had to park over at the Seaco Music Store parking lot on Main Street and walk over. (The store was closed and we know that Mrs. Edgeworth wouldn't mind.) Mama came by. Chase stayed in her car with the boys, circling the parking lot, because they couldn't find a spot to park in either. Mama didn't stay long. She took the boys to her house, to get them to bed.
We were still waiting at 8:50 so Bruce decided to go back up to the desk to ask how long it might be. He explained Missy's medical condition again. The lady there told him that there were still 7 people ahead of Missy. Goodness, if they take them back about 30 minutes apart like it looks like they are doing, it might be 3 1/2 hours before she even gets triaged. The waiting room is filled with people, with more coming in every few minutes.
The receptionist came over to talk with us at 9:12. She said that Missy would be called back after the girl who had come in with the burned hand. They took the girl with the burned hand back at 9:18. Missy just calmly sat, reading her new book that her Granny Opal brought her for Christmas today. I had a book with me, but couldn't read. I entertained myself watching the strange and unwashed coming and going from the waiting room. It was sort of like going to the Sumter County Fair. All the strange ones come out of the woodwork for the fair.
Finally, Missy was called back to the triage room at 9:43. We explained the situation to the nurse. She checked Missy over. Her blood pressure was 94/57, pulse 117, and temperature was 101.4 degrees F. She put a red sticker on Missy's chart. The other choices were blue, green, and yellow. I wonder what the color scheme signifies. I will get Mama to ask Mandy. She is an ER nurse here at Tuomey. The nurse said they would not send Missy back out into the waiting room, as they usually do. She would stay in the triage room until they had a treatment room cleaned and ready for her. I could see out the window that the girl with the burned hand had been sent back out into the waiting room to wait her turn.
At about 10:20, they came with a wheelchair and took Missy to the treatment room. We had been there about 3 hours already. We could hear a child screaming and begging - "help me." Maybe she was the one with the gash in her leg that we had seen come in.
About 11:00, Dr. Bailey, an emergency room doctor came into the examining room. We told the story once more. She ordered a chest x-ray, blood work, pain meds (touradin ? on spelling), Tylenol, and a bag of saline. She was very calm and comforting. Missy and I felt very at ease with her. The nurse drew some blood about 11:30. She was great about letting Missy tell her which vein to use.
She got the IV going about 11:40, setting it for 40 minutes. The nurse, Rhonda, turned out to know who I am. She must have seen my name on the forms as Missy's next of kin. She asked me if I was Bruce's wife. Turns out that she is Roy Bowman's wife. He used to work for Bruce's brother, Ron, at the Avenue Auto Parts store. Roy was the manager for years. He works at Parts Connection at Second Mill Plaza now. He is also the pastor of a small church.
Before Rhonda hooked Missy up to the IV, Missy went across the hall to the rest room. There were some drunk people in the examining room next to us. They must have come by ambulance, because we didn't see them i n the waiting room, waiting their turn. We could smell the fumes in the hallway. Anyway, the blonde woman was hanging in the hall and pointed at Missy, saying something about her bald head under that hat. Rhonda called security on them. (There are signs that say one visitor per patient and stay in the exam room, out of the hall.) Rhonda was very protective of Missy.
December 23, 2003 (Yesterday, has run into a new day.)
They took Missy back for the x-ray at about 12:15 A.M. Dr. Bailey came back about 1:15 to tell us that the x-ray showed some signs of pneumonia in the lower left lung and that she would put Missy on an antibiotic by IV. Rhonda hung the the bag. It was 100 ML of Levaquin which had 500 MG of Levoflaxcin. It was set to drip for one hour.
I gave Dr. Bailey the Charleston numbers, telling her the Christine had said to call the fellow on call on 8 West at MUSC. We also need to know what to do about the 9:15 appointment with Dr. Stuart in Charleston, tomorrow, no now that's today. They need to find out exactly what Dr. Stuart wants done.
At 2:10 A.M. I noticed that the bag of antibiotics had another 16 minutes to run. At 2:26, the stuff stopped and I couldn't figure out how to call the nurse. I couldn't find her by looking in the hall. It just kept beeping.
At 2:45, I found Rhonda and she came in and unhooked the the IV and started up a new bag of saline. It will run for an hour. At 2:50, Dr. Bailey back in. She told us that she had talked with Christine, who had talked with the doctor. They want Missy in Charleston for her 9:30 appointment. I'll call someone in the family about driving us to Charleston, since I haven't had any sleep. I would be afraid to drive. I will call about 6:00. We need to leave by 7:00. If I can't find anyone else, Sean can call Ray and see about getting off to drive us.
Rhonda checked Missy's vitals again. Her temperature ws down to 97.6 degrees. Missy was finally released from the emergency room by Dr. Bailey about 3:45. She thanked us for having been so patient. We told her that they were all very kind to us there, once we got into the back. We also said, no offense, but that we hoped that we didn't see them there in the emergency room again. We had to go through the checkout area. Missy told the lady there, "Thank you. It was fun." I said, "Ya'll come and see us next time."
We got home and got to bed about 4:30. Missy had some cereal before getting into bed. The clock went off at 6:00. We got ready and picked up Mama on the way by 7:00. (I had packed some things for Missy, just in case. She did not want to pack a thing. She said that she was not staying.) It's closer to I-95 from Mama's house as compared to ours. Mama drove, I rode shotgun, and Missy snoozed in the back seat.
We made it to Charleston earlier than we expected. We made good time because the traffic is not bad at all when you are trying to be there by 9 something and not by 8 something. We were at the Rutledge Tower parking garage about 8:45. (And we had turned around to go back for Mama's cell phone when I remembered that mine was dead and I couldn't find my car charger in the Jeep.)
Once Missy signed in, in a few minutes, someone came out into the waiting room with a mask that she had to put on before taking her into the back. They said that since she had had a fever and cough that she had to be seen in the isolation room. They have to follow special precautions during flu season. So, out we went again to room 7, way down the hall from the clinic. Dr. Stuart came in and said right away that she looked much better than he had expected. He of course knew about the all night emergency room ordeal. He asked to see her discharge papers from Tuomey's Emergency room in Sumter. He wanted to know what kind of antibiotic they had given her. He was pleased with her condition and we moved back to the clinic exam room. He ordered an echocardiogram and chest x-ray. Missy signed a release form to be faxed to Sumter so that the Tuomey would fax back her records from the emergency room visit.
We walked over to the main hospital for the echocardiogram. They worked her in. Then we walked back to the Rutledge Tower for the chest x-ray. Then we went back to Dr. Stuart's office. He came in and let us know that the emergency room doctor was right. It seemed to be some pneumonia. He said that Missy could have the chemo that he had told us about earlier in December. Missy signed the chemo treatment release forms. They would work her in in the day treatment area about 3:00. He wrote some prescriptions, and said that we could go and get some lunch, then come back before 3:00, because they might get her in sooner.
We took the prescriptions to the pharmacy, left them there, and walked over to the main hospital for lunch because they have more choices.
We walked back over to the Rutledge Tower, got the medicine, and went out to the parking garage to call home on the cell phone so that everyone would know what was going on and how late we would be.
We decided to just go back to the clinic waiting room and wait for 3:00. We would just read our books in the waiting room. We got there about 2:00 and we had hardly gotten seated when they called Missy back. Most of the patients were in a room together in recliners. Missy was put into a small room with a recliner for her and two arm chairs. They gave her ativan and the gemcitobene (gemzar) chemo. They set it for 1 and 1/2 hours. The nurse said that usually it can be given in 30 minutes but Dr. Stuart told them to slow Missy's down. Probably because they had to put it directly in the vein. She no longer has a port. The nurse did a great job getting a vein. She put the needle into Missy's hand in a vein near the thumb. She got it in on the first try and it worked great. She also said that they call gemcitobene, gencitoburn, because it can burn going in. At one point, Missy felt a bit of burning and I went to get the nurse for her. By the time the nurse got to her, which was quickly, Missy had put pressure with her finger on the burning spot and when the nurse checked her, Missy told her that it was fine. She felt the burning in the top of her hand where it was going in.
When it was done, we all headed out. It was about 4:00. Missy said that she felt a bit of nausea, so we looked for the folks who man the wheelchairs. There were two by the information desk on the 1st floor just waiting for folks who needed them. The very friendly gentleman that I have noticed a number of times, wheeled Missy in his chair all the way to the Jeep. She took a Zofran before we left but once we were out on the interstate, she wanted the air conditioner on because she felt a bit dizzy with nausea. It didn't take long, and she was feeling better. I guess that the Zofran kicked in. Dr. Stuart has promised that this chemo is nothing like the ICE. Missy tolerated the ICE a lot better than some folks. He told her that she was tough.
We stopped in Santee to go to the rest room. Mama was still driving, so she wheeled into Burger King. We thought that Missy might want something, if just a cold drink. She didn't, just the rest room and to get on home. When we got home, she wanted some chicken noodle soup, a bath, and bed. I made sure that she took her medication. Dr. Stuart ordered up some steroids to be taken due to the Gemcitobene. She also has a new antibiotic to take for a week because of the pneumonia scare. Plus, her usual coumadin, lovenox, and iron.
We have noticed a flushed color in Missy's cheeks due to the Gemitobene.
"Good, strong people get cancer, and they do all the right things to beat it, and they still die. So why don't we all just stop and lay down where were are? Because people live." -Lance Armstrong
December 19, 2003
Missy had an appointment to have blood work done at Dr. Clowney's office at 11:30. They will fax the results to Dr. Stuart's office in Charleston. It was a blood coagulation test, checking up on the coumadin levels.
You DO or you DON'T DO. There is no try. - Yoda
December 17, 2003 Another Leaving the Hospital Day
I got over to Missy's room about 8:00. She was eating breakfast: grits, eggs, and bacon. Sarah is her nurse this morning. She is a favorite nurse too. In fact, she was Missy's first nurse on this unit back in October. Sarah wrote on the marker board that the Daily Goal is: GO HOME. The power went out in the room about 8:45. I was working on the laptop, but the battery kept it going. At 9:00, Pam, the nurse practitioner came it. She said that Dr. Brunson would be coming around before long to check Missy out and release her. Pam left to call Dr. Stuart to find out when he wants Missy back in his office.
Dr. Brunson came by about 10:45, checked Missy over and told us that she could go home. She can eat anything that she wants to eat. The only restriction right now is no contact sports. So, darn, no playing football. Hey Gamecocks, good thing the season is over, huh. Missy's next appointment with Dr. Stuart is on December 23 at 9:15.
We hightailed it out of there, because I already had her packed up and ready to roll, waiting for the doctor. Sarah had us all set with prescriptions and instructions, so Carmen took us down to the lobby. Missy insisted on walking to the elevator, and Carmen said that was ok. They called a van for us and we were driven back over to the Hope Lodge. That was Missy's first ride with MUSC Security. The guy almost ran a stoplight, but he got us there in one piece.
We talked to Pearl, letting her know that we would be checking out. We went upstairs and got all packed. I carried one suitcase down and let Missy carry out pillows from home. After dropping Missy's prescription off at the MUSC Pharmacy (pink shirt was wearing burgundy today and didn't wait on me), we went to the Atlanta Bread Company for lunch. It took a while to find a parking place, but we have decided that we'll park in the Charleston Place Hotel parking garage from now on if we can't find a metered spot on Market Street. We bought a pound of pralines at the Charleston Candy Store for Pearl and the other Hope Lodge Staff. We put them in a Christmas bag with an ornament for the tree too. (Jennifer O., it was your ornament. Missy and I decided that you wouldn't mind if it was put on the tree at the Hope Lodge.)
After lunch, we went back to the Hope Lodge so that I could clean the room and bath and finish packing up the Jeep. I let Missy dust with a duster. She also went down and cleared our food from our cabinet. (Crackers, instant grits and oatmeal, Ruffles and tea bags - so not heavy.) We got the Jeep packed, so I walked back over to the Rutledge Tower to get the medicine. We were all checked out and left the parking lot at 4:24. We got home about 6:15.
Do not pray for easy
lives. Pray to be stronger.
December 16, 2003 Taking the Hickman Catheter Out Day
Real difficulties can
I arrived in Missy's room about 7:35 this morning. I waited outside a while so that I could call Lynn at Alice Drive Middle, letting her know to get me a sub again for tomorrow. Missy looks more puffy that ever to me. Ashley, one of Missy's favorite nurses was back on duty. They work 12 hours shifts, so she is 7:00 AM to 7:30 PM right now.
I called Intramed again to let them know that Missy has been admitted to MUSC Hospital. I explained that I had wanted to leave a message but they wouldn't take a message. The lady answering the phone apologized. She said that they sometimes have trouble with the answering service. They have new employees all of the time.
Then I called the bone marrow transplant clinic, using the inside number that I had for the pharmacy fiasco. Carmen, another transplant coordinator, answered the phone. I let her know that the catheter was still in place. She was surprised as they had expected it to be removed last night. She said that if they had taken it out last night that Missy could have left the hospital today. I asked her when Dr. Frie-Lahr would make rounds. She told me that Dr. Brunson would be making round today. We don't know Dr. Brunson. We had only heard of and met Stuart and Frei-Lahr. With that last name, either she or her husband comes from Clarendon or Sumter Counties.
Ashley took the IV out of Missy's hand. She had put it in last night, having had a hard time finding a vein. When the night nurse put in some morphine, she did it too fast and it burned and hurt Missy. It still hurts. Missy asked the night nurse to take it out, but she said wait for the next shift to do it. We don't want that nurse again. We will remember her and will tell the doctors to mark that down someplace.
Someone came into do swabs. They always do that when you are admitted and then every 7 days anyone is here as a patient. It is a preventative for staff infections. This way, if anyone shows up as a carrier and has a staff infection, the doctors and nurses know to gown and glove up before entering the room to keep from spreading it.
At 9:45, Pam, the nurse practitioner came in. She said that she is going to take the catheter out. Then they will figure out the plan from there. Dr. Stuart will be the one doing the figuring.
11:30, Dr. Brunson finally came in with the
small group following. (She's not from Sumter. I asked her.) She examined
Missy and asked some questions about previous blood clots. The told us
that the plan now is to have the surgeon take out the catheter. (Guess
that Pam won't be doing it.) They will have to work her in, so in the meantime,
she goes hungry. (They didn't feed her this morning, just in case.) Pam
said that Missy could have clear liquids, so Ashley ordered up a tray of
12:20. I got back from getting some food. I ate downstairs so as not to eat real food in front of Missy. While I was gone, Chris (from Sumter) got an IV line in Missy's hand.
3:45. They finally arrived from HVC (Heart & Vascular Center) to take Missy to get the catheter out. On our way down, a hospital employee transporting another patient recognized Missy from Friday saying "You're coming back." Missy told her that they were taking her to get the port out. I explained about the clot but that they had gotten all of the stem cells needed.
So, now I sit waiting..... but by 4:45, I was restless, wondering why I hadn't been called back as promised. I asked the lady at the desk to check on her. They were getting ready to take her surgery, so she took me back so that I could see her for a moment. I found out that Dr. McGue would be removing the catheter. We also found out that the doctor who put the line it the other day was not French, but Brazilian. They took Missy back at about 5:00. By 5:30, I was back in the recovery area with her. She feels fine, already saying how much better she feels. No more pain on the shoulder.
In a few minutes, they wheeled Missy back. She wasn't sedated or anything. She said that it didn't hurt. As soon as we got back on 8 West, we asked for food. There was a liquid tray in the room, but she wanted real food. Ashley must have had it on order because Jenny (nursing assistant) brought it in right away. Missy was glad to eat.
I got some food from downstairs and stayed until about 7:30. Ashley told us that Dr. Brunson said that Missy probably be released tomorrow. I got a ride with security and got back to the Hope House about 7:45. There was a holiday fruit basket from the ROTC waiting for us. They brought a basket for all of the rooms here.
What ought one to say
then as each hardship comes?
December 15, 2003 Stem Cell Collection Day
"Always concentrate on how far you have come, rather than how far you have left to go. The difference in how easy it seems will amaze you." - Heidi Johnson
The clock went off at 7:00. We had a scare when Missy got up. There was blood on her pjs and on the sheet from the catheter wound. I went to the phone and called the emergency number for the BMT team. Jill came on the line pretty quickly. Missy headed for the bathroom. Jill said to put pressure on it with a towel or something. We used a pad. She said that if it was still dripping when we came over, to bypass the lab for the blood drawing and come straight on upstairs. We got dressed really fast and headed for the Rutledge Tower in the car. I let Missy out since it wasn't dripping, parked the car, and by the time that I got there, she was back talking to them in the back in the clinic. She had just walked on back. (Once you know your way around, you know where to go. She just got off the elevator and bypassed the receptionist.) I was coming through the door to the clinic as they were putting her in room 1. (I hadn't seen her in the waiting area.)
Christine, the nurse practitioner changed the dressing, putting on a pressure bandage. She got her cleaned up while Cindy, the clinic nurse drew blood. Before we had left the Hope House, I had noticed that Missy's face was all puffy. I pointed it out to Christine. She had Dr. Frei-Lahr come in and look at Missy. They called transportation and sent her over to the main hospital by wheelchair to have a Doppler done. This is an ultrasound, done to see if there are any blood clots.
Once the ultrasound was finished, Missy came out into the waiting room, saying that they had contacted transportation to take her back over to the Rutledge Tower to the bone marrow transplant clinic. Before the wheelchair came, a message came for me to call Cindy, the clinic nurse. When I called, she said that Missy's blood work looked good and that we were to tell transportation to take her to the hemapheresis unit, not back to the Rutledge Tower. She also said that the Doppler showed a clot.
When transportation arrived, I had to convince her (the wheelchair pusher) that I knew what I was talking about when I told her that Missy needed to go to the hemapheresis unit, not the Bone Marrow Transplant Clinic. I had to give her the nurse's name and show her the note that I had been given with the inside phone number that I had called.
We arrived at the hemapheresis unit about 10:45. The transportation lady seemed relieved that they welcomed Missy and were expecting her. (I guess that she didn't want to get in trouble for taking her to the wrong place.) They got Missy settled into a bed. The supervising nurse, Erny (Ernestine) was called over and she checked Missy over. Dr. Frie-Lahr came in and Erny told her that she had read her mind, that she was just getting ready to call her.
Dr. Frie-Lahr said that the plan was to use the port to do stem cell collection today. She felt that there was a 50/50 chance that it would work and they would get enough today. We won't know until a while after the collection is complete if they were able to collect enough cells and it takes 5 hours. If they don't get enough cells today, they will still take the catheter out of her chest and put a temporary catheter in her groin to collect more stem cells tomorrow.
Missy wanted some lunch because she hadn't really eaten breakfast, we'd been in such a hurry. I had grabbed a couple of muffins and bottles of cranberry juice for us which we ate while waiting for transportation to take Missy for the ultrasound test, in the clinic examining room.. When Dr. Frie-Lahr left, I went down and picked up some Chick Fila for her. She ate about 1/2 of her chicken salad sandwich and waffle fries. She said that the swelling made it hard to swallow. I ate the rest.
The nurse put Missy's next nuepogen shot in the fridge for me. Maybe she won't need it tonight. If they collect enough stem cells, she won't. They started the pheresis at 11:50. Erny set the lines up. She explained that Missy's blood will go through the machine, but the operator watches everything and actually has to set the machine as she watches the blood separate. It will take about 5 hours. Missy had to sign a blood donor form even though she was donating to herself. It's a government regulation that you have to sign the form.
Missy's other nurses were Stephanie and Tina.
At about 12:30, Missy decided to take Stephanie up on her offer to watch a movie. She was the only patient there for the 4 beds. Missy chose "The Grinch Who Stole Christmas." She said she rented it near last Christmas but fell asleep before seeing it all.
"Every Who down in
Whoville liked Christmas a lot,
At 1:12, Stephanie assured us that everything was fine and really looked great in the blood filtering machine. She showed me how Missy's blood was looking in there. She checked to make sure that Missy didn't feel any tingling in her lips which would indicate that she needed some calcium. They will inject it if needed. Missy did make sure to drink lots of milk over the weekend. She had been told to push the calcium and she likes milk.
Tina checked on Missy at 1:25. (They are checking her every 10 - 15 minutes and logging information.) Missy told Tina that she felt like she was "buzzing." Tina said, "It's about time. I'll get you some calcium." She injected the calcium into one of the tubes hooked into Missy's port. It worked fast.
Missy rolled over onto her side and they noticed that the blood in the machine showed darker. They adjusted the machine to compensate.
Tina told us that she had brought in the Grinch movie. She was enjoying watching it as she worked and took are of Missy. She would laugh at parts with Missy.
She explained that the machine separates
the blood into 4 components:
They only want to keep Missy's white cells, from which they will harvest the stem cells. They are putting the rest of the stuff back into Missy.
Another patient came in for a while, but he wasn't there for the same thing. He didn't stay long
At 3:07, Dr. Frie-Lahr called and told Stephanie that they were going to admit Missy after the pheresis is done today. Next thing on the agenda is to get the port out tonight. The clot is at the tip of it. Missy said that if they do anything else "big" to her that it had better be under general anesthesia. In fact, Christine mentioned this morning that the surgeon said that if he worked on Missy again, that it would be done with a general. Dr. Frie-Lahr said that the port would come out easily since it had only been in a few days and they that could do it in the hospital room once Missy was admitted. If they able to collect enough stem cells today, great. If not, they will put in a temporary line in her groin and collect again tomorrow. She said that her count is 4.3 million and the minimum is anything over 3 million, so her counts are great so if the collection goes well, they will get enough.
Christine and Jill both came by to visit with Missy in the pheresis unit. Christine re-explained what Stephanie had relayed to us via the phone from Dr. Frie-Lahr. Jill reemphasized that Missy's counts are great.
At 3:45, Pam, the nurse practitioner from 8 West came by to explain about Missy being admitted. She re-explained what the plan is, adding that since Missy had had a deep vein thrombosis that the doctor had actually done angioplasty when he was putting the port in. That's why putting it in in her neck had not worked out. Missy is still swollen. Her whole face is swollen. She does not look like herself. She says that she looks like the Citadel Bulldog.
I decided that I had better run take the car to the Hope House and get some pjs and other things for Missy. Erny told me that it would be easier for me to walk back to the pheresis unit and showed me from the window, which way I should come. I needed to come back via Ashley Avenue, and enter the door at the Storm Eye Institute. I left at 4:10. When I got back to Hope House, I told Pearl the news. She told me that she had put our laundry in the dryer. (I had thrown Missy's bloody clothes into the washer before we left and gotten it started.) I put Missy's leftover nuepogen into the fridge, got the laundry and went upstairs to pack up some things for Missy.
I got back to the pheresis unit just as they were unhooking her from the machine. 8 West called over to say that they had a room ready for Missy.
By 5:30, Missy was settled into room 876 with her favorite nurse Ashley in charge of her care. She is the one who told us that she is a Clemson fan. I wonder if she realized that she was wearing black pants and a garnet top today. Looks like University of South Carolina Gamecock colors to me :)
A little before 6:00, Ashley came by to tell us that they collected enough stem cells today. YEAH!!!!!! No groin catheter tomorrow.
About 8:15, a doctor (resident I guess) came by to check Missy out. He was Alex ????? He looked at her catheter wound and explained a bit about the situation. A clot is forming around the tip of the catheter where it is in her body. Taking the catheter out will stop the clot from growing. They are going to pull the catheter out in a little while.
He came back, having changed his mind. He doesn't want to take it out in the room. He wants the doctor who put it in to take it out. Thus, it will have to wait until tomorrow.
So, by then it was about 9:00 and I decided to go back to Hope House so that Missy could get some sleep. I asked at the front desk which way was the best way for me to walk back. The gentleman there told me that I did not have to walk back in the cold and dark. He called security to take me back. I learned from the driver that that this is a service that they provide. They will escort people to the parking lots and garages and they will drive folks to nearby hotels, the Ronald McDonald House, or Hope House. They will pick us up and drive us to the hospital too. I remember Elaine telling us about transportation and giving us a number, but we didn't realize what it was. We thought that it was a taxi service and we have my Jeep and figured we didn't need it. Now we know. No more walking unless we really want exercise.
There was a message from Intramed. Debbie figured that the dressing would need changing again. I called back to let them know that Missy was in the hospital, but was told by the answering service that they didn't hold messages. That makes no sense. She said to call back tomorrow.
He who limps is still walking. -Unknown
December 14, 2003
Still quiet at the Hope Lodge. Bruce and I took Missy where she wanted to go for lunch, Hyman's. (Or maybe it was Bruce who wanted to go.) Once we had finished our lunch, Missy wanted to go over into the market and get her charm bracelet. She bought a bracelet and a Gamecock (University of South Carolina) charm and had the guy put it on the bracelet along with a couple of other charms that she had picked up before. She says that now we know what to get her for birthdays and Christmas, new charms. She also wanted pecans from the candy store.
Bruce left for Sumter about 2:30. Now we are just waiting for the nurse, Debbie, to come by. Missy's dressing on the incision needs changing again. She is worried that they may not be able to do the pheresis on Monday because it is still draining some. We'll see. They have her down for all week, just in case. I have sub plans ready for all of next week, just in case. Then after that, it's Christmas break.
She is napping now. She gets tired quickly. The weather outside is cold and wet, so it's a good day to snooze. I'm just outside the door in case she needs something.
Debbie, the Intramed nurse came about 6:00 to show me how to change to dressing on Missy's Hickman catheter wound again. Missy just wanted soup and crackers for supper. She ate in the room and just went to bed early, reading and watching a bit of TV. She fell asleep and I watched A Christmas Carol on TNT. We set the clock for 7:00 so that we can be across the street with her having blood drawn for labs by 8:00 and into the bone marrow transplant clinic by 8:15.
What's courage but having faith instead of fear? - Michael J. Fox
December 13, 2003
Today is Saturday, so the Hope Lodge is pretty quiet. Everyone else who was here during the week has gone home for the weekend. It's just us and Pearl, the weekend manager. Bruce got here about 10:00. Missy sent us to get her an Atlanta Bread Company loaf of soup. It's a round loaf of sourdough bread with the middle cut out and the soup poured in. She really enjoyed it.
She is having pain from the port. It's in her chest where the old mediport was, with the tube part under her clavicle. She is taking her pain pills. She can tell when the pills wears off. The nurse, Debbie, from Intramed came as expected at 1:00. She talked me through how to change the dressing on Missy's incision. She left instructions and supplies for one more change. She will call tomorrow afternoon so that I can tell her whether I think it needs changing again. I'll be able to tell from looking at the bandage and seeing if I see drainage staining it. If so, it needs changing. She will come back if needed. Later, it will need changing once a week. We'll also flush the tubes on the catheter. Right now they have high dose heparin in them and won't be flushed until used for stem cell collection. Debbie will come show us how to do that once that's over with. She plans to come to Sumter. They have an office in Columbia, but she said that since she has seen us, it's probably going to be her coming. I told her that I had never heard of Intramed. She explained that they help people take care of anything intravenous in their home. Some people even take chemo and IV antibiotics at home, and they help them do it. She suggested that I go over to the drug store across the street and get a heating pad for Missy. That will help with the soreness. Missy's shoulder and neck are sore. Debbie said that if from them bearing down on her so hard. I went over and got the heating pad and Missy is using it on her shoulder.
About 3:30, Missy felt like getting out a bit, so we all went to the market area again. She wanted to see the big cruise ship that we had told her was docked at the foot of Market Street. It was something, huge. She wanted to go into the same store that we went into on Thursday and look at charms again. The lady remembered us and asked Missy how she was doing. Then we went to the candy store so that Missy could get some special pecans. Next she wanted some chai tea from the Atlanta Bread Company. We went in there, sat down with Missy's tea and Bruce's hot chocolate. After that we came back to the Hope Lodge, left Missy there, and went over to James Island to get her some fried chicken from Churches. She is watching TV in bed right now, with the heating pad on her shoulder, arguing with Bruce about dinosaurs and water. (Beats me, those two love to debate whatever.)
I've been trying to
find the word that says what I need to be in life. 'Brave' is the only
word. It's the only thing that I ask myself to be." -Sandra Bullock
December 12, 2003 Getting the Hickman Catheter in Day
A.M. We drove over to the Rutledge Tower parking garage today, because later today, at 11:00 Missy has to check in to have the Hickman catheter placed.
First, we stopped at the pharmacy to pick up the nuepogen. We got stuck there waiting for them to locate it (I told them that it was in the fridge), so Missy went on up to the doctor's office. By the time that I got upstairs with the medicine, Missy was already back in room 4. The nice lady that always checks Missy in let me know that they have Missy down for an appointment on Tuesday the 16th to see Dr. Stuart so I'll call Lynn today to let her know that I do for sure need a sub that day. If the 16th turns out to be another stem cell collection day, she will have to come back another day for the checkup.
Just after I got back into the room with Missy, Jill, the transplant coordinator came in to collect the Nuepogen. She filled the syringes and put each one in a little bag, along with alcohol swabs and a Band-Aid, marked with the day to be used. We talked about what other meds Missy will be taking. Jill wanted to make sure that she had enough coumadin and that we had the lovenox. She took the coumadin prescription that we still had and gave it to Maureen (the transplant team pharmacist) to take down to the pharmacy on the 1st floor. Then began the saga of the pharmacy. On December 3 the medications that they wanted Missy to take were called into the pharmacy on the 1st floor of the Rutledge Building. We picked up pain meds for after the catheter placement and we picked up lovenox. At first, they tried to give us only 2 lovenox shots. They said that was all that they had and they would order some. I showed them the calendar that Jill had given us to help keep up with everything showing that Missy needed to take 3 lovenox shots before we returned to Charleston. They called another MUSC pharmacy and got one more lovenox shot before we left for Sumter. (We didn't know that the prescription was for 30. It was called in.) So, upon talking to Jill about when Missy needs to restart the lovenox, we found out that the prescription was for 30. She got Maureen, the BM team pharmacist to go down and straighten it out after checking with Christine, the nurse practitioner to make sure that the prescription had been written for 30. We would be taken by Christine to tour the hemapheresis center. The plan was that I would walk back over to the Rutledge Tower to get the lovenox while Missy was having the catheter placed.
At 10:30, Christine, the nurse practitioner took us to tour the hemapheresis unit. We met the doctor in charge there and a nurse. The nurse explained how the process works and gave us a handout.
By 11:00 we were on the 5th floor at vascular surgery unit. Missy was scheduled to be on the table at 12:00. She was called to the back about 11:30. The nurse told me that I should go get some lunch, because it would be a while before they got to Missy, at least an hour. So I figured that it would be my chance to go back over the Rutledge Tower and get the lovenox and lunch. I went back to the pharmacy and was told by the pharmacy tech in the pink shirt that we were owed one more lovenox. I explained that the prescription was for 30. Then she decided maybe it was one more box (box of 10). I explained that the prescription was for 30 shots and we had only gotten 3 shots on the 3rd. Another pharmacy tech got it figured out and the the pink shirt one argued with him about it. Finally, I asked them to please get the blonde lady who had waited on us on the 3rd. She knew exactly what I was talking about. The error turned out to be the note, "owed 1 more" marked on the prescription. She had meant that we were waiting for one more syringe before we could leave to go home to Sumter and that we would pick up the rest of the prescription (27 more syringes that they would make sure to have in stock) when we came back to Charleston.
P.M. Once I got the lovenox and walked back to the hospital, I was only back only a few minutes when I was called to the phone. It was Jill, the transplant coordinator. She had figured out that the pharmacy had given us the wrong dosage of nuepogen, not strong enough. (She had already given Missy a shot of the stuff before we left the clinic.) So, she wanted me to go back to the pharmacy over in the Rutledge building and pick more up, bring it back to her and let her get the shots fixed up again. So, I walked back over (they told me it would be another good hour before Missy was taken back for surgery). The pink shirt waited on me. I explained the situation. She didn't get it, so I asked her to call the bone marrow transplant clinic. She called, then told me no one answered the phone. I gave up and went upstairs to see Jill. Jill knocked on the clinic pharmacy door (this is where they mix the chemo) and no one answered. Maureen must have gone to lunch.
Jill decided to go downstairs to the big pharmacy with me to get it straightened out. She got to meet Ms. Pink Shirt. Boy, did Jill get mad after she explained it all and Ms. Pink Shirt sucked her teeth, spoke to Jill in a rude tone, and wouldn't help. So, Jill asked for the manager. He came over with the box of nuepogen in his hand. It was ready. He apologized for the mix up. Jill let him know how rudely we had been treated and how many times I had been to the pharmacy and that I should be over with my daughter right then, not back in the pharmacy. Jill took the nuepogen and promised to bring the filled syringes to me over in the waiting room at the hospital. When I got back, I found that Missy had been taken to surgery 5 minutes before I got there. That was about 2:10 for a surgery scheduled for 12:00. Jill brought me the nuepogen (on ice of course) about 3:40. I could see that she had her coat and was headed home.
"Treat everyone with
politeness, even those who are rude to you,
Missy got out of surgery about 4:00. She was very upset. They did the twilight sleep and she knew what was going on. Plus, the doctor decided that he was going to put the new catheter in her neck on the left side. Dr. Stuart had told us that the new one would be put in the same spot as the old one. Well, she now has a new hole in her neck where the surgeon could not get the catheter in. There is a swollen lymph node there. He ended up having to put the new Hickman catheter in where he took the mediport out. I never got to meet the surgeon due to the pharmacy fiascoes. Missy said that he has a French sounding accent but maybe Spanish. (Turned out to be a Brazilian, Dr. Marcelo Guimaraes.) So, imagine a man with a what we later learned to be a Portuguese accent saying, "Melissa, you give me an ulcer." He was talking about not being able to get the catheter into her neck.
They told me that they would release Missy at 6:00. I had to figure out about how to get the car back. The nurse had to check to make sure that I would be able to go through the building and across the people bridge to get back to the Rutledge Tower and across the other over the street bridge to the parking garage. She was concerned that they would close the clinic building at 5:00 and I wouldn't be able to get out and would have to walk via the streets. I would have been lost because I had only done it by way of the indoor signs. Thankfully she found out that I would be able to go the way that I knew, through the indoors and that I would be able to get out of the Rutledge Tower, just not back in. So, once again, I walked from the hospital to the Rutledge Tower. (Jill says it is at least a mile one way.) I got the car from the parking garage and met Missy in the wheelchair in front of the hospital at 6:00.
We came back to the Hope House. Missy got settled and I went out to get her some Chinese food.
No matter how difficult the challenge, when we spread our wings of faith and allow the winds of God's spirit to lift us, no obstacle is too great to overcome.- Roy Lessin
December 11, 2003
A.M. This morning Missy had to be at the clinic at 8:00. They did some blood work. We waited for the results. Her counts are great. They told us to be back over at the Rutledge Tower at 9:00 tomorrow. First we have to stop by the pharmacy and pick up the nuepogen (growth factor shots), coumadin, and lovenox (shots too). They will be showing me how to give shots tomorrow and we will tour the transplant center. Missy is to not eat anything after supper tonight. She can have clear liquids in the morning, because the catheter placement is scheduled for 11:00. We were back at the Hope Lodge by 9:38. (We have to sign in and out.) Now, we will go out and "do Charleston." We are going to the market, maybe have a carriage ride (if it gets warm enough), and whatever else we can think of. We'll go until Missy tires out. We'll take pictures. Today might be the last day for a while that she gets out and about. We'll eat out for lunch and then pick up something to fix for supper. After that, we will probably be dining in here at the Hope Lodge. I'll figure out what to cook. I know where the Piggly Wiggly is and there is a Bilo over on James Island. Oh, our number here is 843-958-0930, ext. 115. We have voice mail. I'm leaving the cell phone on too. That's a local number for those is Sumter. If you need that number and don't have it, just ask Bruce, Sean, my mother, and Wanda Lane has it too.
P.M. We had a great day. We left the Hope House about 10:30 and drove over to Market Street. We parked near the carriage ride barn that we have parked near before when we have come to Charleston. We walked down Market Street, toward East Bay, looking to decide where we wanted to eat. We were given a coupon for a free appetizer and decided to try the Cornbread Cafe. Ya'll, it was really good. The appetizer was fried green tomatoes. I've made them at home but never had them out before. They had some sort of sauce to dip them it. It was good too. It reminded me of Zaxby's secret sauce, but thinner. It was hard to decide what to order; there were a number of $5.99 specials. We both decided on shrimp and grits and got lima beans and corn for our two sides. We had cornbread of course. The shrimp and grits were really good. Plain, like I like them, without all sorts of extra stuff in it. (Missy and I don't care for cheese in our grits, just butter please. Also, no gravy, just salt and pepper.) They were the creamiest grits that I have ever have. I guess that they weren't quick grits like we fix at home, but the slow, long cook kind.
Then we went into a couple of shops near the cafe. One was filled with just dog and cat stuff. Pillows, bags, figurines, etc. The other shop was full of cute socks, mugs, sweaters, and stuff like that.
After we ate, we went to the Charleston Candy Kitchen and bought, guess what, Papa Howard, pralines. A pound and a half, because if you bought a pound you got half pound free. They had just been made and they gave us a taste before we picked what we wanted.
Then we walked the market. I finally broke down and bought a sweet grass basket. The lady talked to us while and we ended up telling her why we are in town. She told Missy that her hair would probably grow back in curly.
Then, since it had finally warmed up some, we took a carriage ride. Our driver was a lady, originally from Walterboro. She was so funny. She was a former math teacher, who decided to become a carriage driving tour guide. There were folks from Boston, some ladies from Walterboro, a couple where the lady was originally from Sacramento, but now living in S.C., and us. It was great. We got the tour that took you by Rainbow Row. Missy really, really enjoyed it.
Sitting in the carriage in the barn, waiting
for Jesse, the horse to take off.
Then we came back to Hope House so that Missy could take a nap. I talked to a lady who is here with her husband. They are from Georgetown. When I told her that Missy was born in Georgetown, she said, once a Georgetonian, always a Georgetonian. Her husband has small cell lung cancer and is here for radiation. We have also talked to a lady and her nephew who are from Lamar. I didn't catch her name, but ended up sharing the kitchen. They have been here a while, more than once, so they have shown us the ropes.
White Missy rested, I drove over the Ashley River to James Island to Walmart and Bilo. I bought steaks to cook, since Missy can't eat after midnight.
Sean called to let us know that Missy's dog, Angel is having her puppies. My mother called later to let us know that she has 3 little babies, 2 males and 1 female. Missy hated to miss it.
If I were asked to give what I consider the single most useful bit of advice for all humanity, it would be this: Expect trouble as an inevitable part of life, and when it comes, hold your head high. Look it squarely in the eye, and say, "I will be bigger than you. You cannot defeat me." - Ann Landers
December 10, 2003
We are all checked into the Charleston American Cancer Society Hope Lodge. We arrived about 4:00. Our room is on the front corner, overlooking Ashley and Calhoun Streets. We can almost see the Rutledge Building where the cancer clinic is located. There seem to be 9 suites for patients and their caregiver here. We are in suite 3. The house is actually two very old houses put together. Parking is in the rear. There are some common rooms: kitchen, dining, living, and sitting room. Linens are provided and cleaning supplies. There are two twin beds in the room. Our bathroom is in the hall. We have to use the key to the room to get into the bathroom. We don't have to share the bathroom; that's just where it had to be put when the house was renovated. The bathroom for suite 4 is next to our bathroom. There is a computer just outside of our door. I'll use it to upload the updates.
forgetful to entertain strangers: for thereby some have entertained angels
We went to Hyman's Seafood for supper. We couldn't eat all of it. Bruce should have been there. He could have finished off our plates. We went into the Charleston Place shopping area. Missy got a sweater. It's a mingled orange color. The salesgirl told her that it would go great with her coloring. Missy let her get out of hearing and said, "Little does she know, this sweater is going to match a wig." She was wearing her wig. It is a bit redder than her natural color. Not carrot top red, but some redder.
After Charleston Place, we had our adventure finding Sam's. We had seen it from the interstate on previous trips but could not recall exactly which exit we needed to get off on. Well it was raining, and got worse, so we of course, missed the exit. We got off at the next exit, turned around, and missed it coming back the other way too. By then, we knew for sure that the exit is Aviation Avenue East. So, I turned around again, and we got there that time. So, if you ever come to Charleston, get off I-26 at Aviation Avenue East to get to Sam's. I got some of that bread that I like and we got some juice to have here at the Hope Lodge. (We get to share a fridge.) We got a few other things too, but they are Christmas gifts so I won't say what they were.
I found the piece of paper where I had written down the names of the high dose chemos that Missy will have before transplant: carmustine (BCNU), cyclophosophamine, etoposide (VP16). When they give her more chemo before coming up on transplant time, it will be gemcitabine and navelbine. They said that they would do those two chemo therapies on an outpatient basis. The high dose stuff will of course be inpatient in prep for the transplant. She'll be in hospital for those treatments. Day 1 will be carmustine over 60 minutes and cyclophsophamine over 2 hours. Day 2 will be cyclophosophamine over 2 hours and etoposide (VP-16) over 4 hours. Then the next couple of days more etoposide, 2 days of rest after chemo and then on the last day, the transplant. On the 7th day after transplant, GCSF injections will be given daily to boost the recovery of white blood cells. It's fully expected that blood transfusions will be needed during the first 10 days after transplant. Antibiotics will be given to fight infection.
cyclophosophamine - sides effects
etoposide - side effects
December 5, 2003
Today, Elena Bell, the financial social worker, called from MUSC. She left a message on my voice mail at school. She has us booked into the Hope Lodge (American Cancer Society house) for when we return to Charleston on December 11. Our first night there will be the night of December 10. That's wonderful news. The Hope Lodgeis just across the street from MUSC. She told us that they have parking. No more parking garage and we won't have to get up so early to be at the clinic at 8:15 on Thursday morning.
When you come to the
edge of all the light you know, and are about to step off into the darkness
of the unknown, faith is knowing one of two things will happen: There will
be something solid to stand on, or you will be taught how to fly.
December 3, 2003
Today, Missy and I returned to Charleston to meet with the bone marrow transplant team. It was a long, long day. They had said about 3 hours. It ran on to about 4 1/2 hours. Dr. Stuart wasn't there today. His clinic day is Tuesday. Dr. Frie-Lahr saw Missy today. Her clinic nurse is Cindy. (I should be able to remember her name.) She taught Missy how to give herself a shot in the stomach.
We also met the pharmacist named Maureen, then with Marian, the financial advisor, who put a dollar figure on what a STC runs nowadays. Are you sitting down? $75,000. We met a financial social worker. She helps arrange things like stays at the Hope Lodge (American Cancer Society house.) When Missy is an out patient and needs to be in Charleston, we can stay at the Hope Lodge (if there is a room that is). When she is an inpatient, I have to move to a hotel or head home to Sumter. [We found out once we checked into the Hope Lodge that while the patient and caregiver are residents of the Hope Lodge, that if the patient is hospitalized for up to 3 nights, the caregiver can still stay. If longer, the caregiver has to give up the room. I ended up stayed two nights when Missy was hospitalized due to the Hickman catheter problem.] We met an oncology psychologist, but Missys doesn't care tp talk with a stranger. Jill, the bone marrow transplant coordinator worked up ap upcoming events calendar for Missy. We met the nurse practitioner. I hope that I didn't forget anyone. Everyone was so nice.
According to the calendar, Missy needs to be at the clinic at 8:15 on December 11. Then on the 12th she will have a Hickman catheter installed. We'll do a tour of the clinic, attend some classes. (I have to learn how to give shots, take blood pressure, etc.) We'll be there through the weekend and on Monday, it's stem cell collection day. They have her down for a full week of that, if needed. It might take one day, two days, three day, etc. They won't know until they start collecting the stem cells.
We ended up eating lunch in the little cafe in the Rutledge Building. The food was pretty good. Tables were at a premium. They must have let a lot of folks out of their doctor's offices at 1:30. We ended up finishing quickly and giving a lady and gentleman who were in their sixties our table. While I was wiping the table off, the lady touched Missy's shoulder and said to her, "You've lost your hair haven't you?" Missy shyly nodded, yes. The lady said that she had been through chemo twice and lost hers twice. Then she looked straight at Missy and said to her, "You are beautiful." Missy said, "Thank you," and we gave them our table. Then Missy's had some blood work done and we picked up prescriptions at the pharmacy in the building. These were some special medicines that our local corner drug store wouldn't have in stock.
Every time we leave home and go to another place, we open up the possibility of having something wonderful happen to us. When we move out of the familiar here and now, we set in motion a series of events that, taken together, bring about changes at the very root of our being. (from The Way of the Traveler) - Joseph Dispenza
December 2, 2003
Missy had a CT scan this morning at 8:00 a.m. in Charleston. We left our house at about 5:45, stopped for gas, and made a pit stop on the interstate once because of all of the "stuff" that she was having to drink along the way, every 30 minutes. We barely made it in time because the traffic was just awful today due to a couple of wrecks, but we made it. It's really about a 1 1/2 hour drive from our house to Charleston, but not during rush hour and not when you get trapped on I-26 behind pile ups. The I-95 leg of the journey always moves right along, even though there are tons of big trucks, but I-26 once you get to North Charleston can be a nightmare.
The CT deal went pretty quickly and then we made our way over to the Dr. Stuart's office for her 9:15 appointment. They are really great over there with not keeping you waiting. She was called back by the nurse about 9:00. By the time she saw the doctor a few minutes later, he had already seen her CT results. Her tumor has shrunk. Not a huge amount but enough to be pleased with how the 2 treatments of ICE worked. For the next chemo cycle he will use something new that she does not have to be hospitalized for. She returns tomorrow to meet with the entire transplant team and I will write the name of the 2 chemos down. I had never heard of them. (And I have been on the Hodgkins mailing list since Sept. 2002 and have seen lots of chemos mentioned.) He said that they are new and showing very good results without the awful side effects and they can be done outpatient.
We feel pretty good about the results so far. In the beginning they really wouldn't give us a time line. They just said that they would be able to tell us more after the 2nd cycle of chemo. Plus they had said that there would be from 3 to 6 cycles of the in hospital chemos before the stem cell collection. Now it looks like 2 in hospitals before the stem cell collection and those are behind her.
We meet with the full transplant team tomorrow at 9:00. Two doctors, nurses, pharmacists, psychologist, social worker, don't know who all else. They said that we'd be there about 3 hours.
The plan now is to put in a Hickman catheter. (She has a plain old mediport, cathport now.) They have tentatively scheduled her for staring the stem cell collection Dec. 15 and possible 16th if a second day is needed, but he said that the way her counts look now, they should be able to get enough stem cells collected in one go round because she has had such a good response to the neulasta shots.
Dr. Stuart said that they won't mess up her Christmas and will work around it. They worked around Thanksgiving pretty well. She was up to eating turkey with all of the trimmings on Thanksgiving Day.
She had her first Procrit shot today. White count and nuetophils were way up, but hemoglobin and platelets needed a boost.
Missy's little Chihuahua, Angel should have puppies any day now.
"Be nice and smile to everyone you meet. You don't know what they are going through, and they may need that smile, and treasure it." - Christine M. Huppert
November 26, 2003
Today we went out and found a wig for Missy. We went to two stores on Main Street in Sumter, but there wasn't anything suitable there. We found out about a store called Wigs on Broad, but it's not on Broad anymore. So, we went there, and Missy chose a wig. She chose it for color and comfort. There was one that she liked the style of a bit more, but it was itchy on her head. The lining was different. Now we know what a good wig's price is. We spent $185 and she got a discount because of being a cancer patient.
These were cute but itchy.
November 22, 2003
Today has been spent trying to find the medicines and at the best prices. Bilo is mostly cheaper. Eckerd was on one, so I got that one there. I have a bunch of spray Lysol. Even have one can of it sitting there with hand sanitizer on the table by the door on the porch.
I read an article in the Sumter paper just now about the research lab at MUSC being one of the tops in the nation.
Anyway, Missy came home last night from her second treatment of ICE to get her into remission for hopefully SCT (auto type). She will have a neulasta shot on Monday. She had one after the 1st treatment too. That got her white count up to where they wanted it. The problem this time was her hemoglobin. They gave her two units of blood yesterday, because her hemoglobin was about 8.0. They now have her taking 3 ferrous sulfate iron tabs a day. That's 3 times the dose the box says. (It's not a prescription, but they wrote one for it. The pharmacist said that it's over the counter stuff.)
Today, she seems pretty relaxed at home. There are lots of rules about foods and even water. (No well water. We have a well out here in the country. So we are pretending that she is in Mexico. She went there once on a high school trip so she remembers the precautions.)
She did lose her hair, almost all at once the other day. She never lost it with the ABVD.
She is eating small meals often. Oatmeal and then soup today. She is taking her nausea meds to keep the yucky feeling away. Last time she had to take the nausea meds for 3 days and then was ok.
She is tired, but she just spent 4 days in the hospital getting chemo, (3 days of IVs, 1 day of delay due to the hemoglobin.)
Her next appointment with her Dr. is Dec. 2. She will have a CT scan that morning before the visit. Dr. Stuart said that he will be able to tell us more then about how the treatments are going.
She did not have any bone marrow involvement. The results of those tests are back. That's great news. She is having a bit of trouble with clots so she is on a blood thinner. They also have her on 2 antibiotics as a precaution. (7 days worth.)
Her sprits are good. She has such a great sense and humor. She was upset because we had to tell her once we got home from the hospital that her little dog, Rocky was run over by a car on the day she went into the hospital. We don't know how he got out, unless it was when the car was being loaded with her suitcase, etc. She had a bit of a cry, but got ok. She has her other little dog, Angel, who is going to be a mother Chihuahua (how do you spell the name of the Taco Bell dog?). Rocky was the daddy dog, so maybe there will be a pup like him.
Her humor came out when she was sitting at the kitchen table last night, eating some chicken noodle soup.
She said, "I've got cancer that came back or never went away, my hair just fell out, and my dog got hit by a car, or maybe a tractor."
"Hey, I've got the start of a new country song."
So then she started singing and added:
"Puke on my chin, crying into my chicken soup, drinking Gatorade, cause I can't drink well water. I can't even drown my sorrow in a beer, cause it'll make me sick....."
Goodness, but she had us almost rolling on the kitchen floor. She is sitting there with that cute little smile on her face, no hair, eating soup, and we're all howling with laughter, so I wrote it all down. She'll have to think of some more.
"When you feel like nothing is there but pain and hurt and great despair, that is when we know we need to not give up, whatever it is we're going through." -Unknown
ICE Side Effects
Your bone marrow is where your blood cells are made (these are the red cells, white cells and platelets) to replace those naturally worn out within the body. Chemotherapy interferes with this process and the number of cells in your blood can become low. This means that following treatment you could become:
Prone to infection:
Prone to bleeding:
Nausea and vomiting
We (the family) can tell that the ICE is doing something. Dr. Stuart says that he can tell just from her outward improvements. The vein in her neck has gone down, her breathing is much improved, hardly any coughing now. She is much improved, pretty tired from the chemo and all, but the tumor has obviously shrunk even without having a CT scan to show that yet.
She goes to her regular oncologist on Monday for a neulasta shot. Then she has a CT scan on Dec. 2 and a visit with her SCT doctor. He says that they will be able to tell us more about her progress then.
ICE consists of :
This is a salvage chemo regimen for when ABVD didn't take care of getting rid of the HD. It's done in hospital, with mesna given before hand to protect the renal system.
Before the stem cell or bone marrow transplant, salvage chemo is used to get the patient stable.
You can't keep misery
November 21, 2003
My mother went to her doctor for a
check up today. She told Dr. Jordan about Missy. He was Dr. Stuart's fellow
some years ago. (He decided to stick with Internal Medicine.) He told her
that Dr. Stuart and Dr. Frie-Lahr are
One of my last year's students brought me a card from his Grandmama today. She wrote me a note about how she is praying for Missy and wanted to let me know that she has a niece who has had the same thing and had a Stem Cell Transplant in NY in January and is doing fine. They are having a yard sale to help with Missy's expenses tomorrow morning at the school. Wanda Lane is in charge. We're really grateful for the love being shown by everyone at Alice Drive Middle School.
Lendon brought Missy home from MUSC. They arrived late, about 8:30. They wouldn't release her from the hospital until about 5:00. They had to give her 2 units of blood because her hemoglobin was down to 8.0.
Missy's Aunt Kim Sutton went to the Looking Glass (special store at the Hollings Cancer Center) and purchased two hats for Missy's. Missy really likes them. They are very comfy. Her father got her two stocking like hats from a ski shop. They are very warm.
Missy asked for Rocky about 15 minutes after she got home. Little Angel was running around getting her attention, but little Rocky was missing. I hated to have to tell her that he had been hit by a car on Monday.
She was pretty tired from her 2nd round of ICE. They didn't get it started as soon as they had planned, so that's why she had to wait to come home today instead of yesterday as we had expected.
When I hear somebody
sigh, "Life is hard,"
November 17, 2003
Bonnie, Dr. Stuart's nurse called about 9:00 to let Missy know that they had a bed available for her. She had to be there by 12:00. Mama left a message on my voice mail at school to let me know that they left about 9:30. Brandi, my brother Chip's wife went with them to Charleston. Mama stayed in the car with Christian (Missy's 3 year old) and Morgan (Brandi's almost 7 month old) while Brandi went in with Missy to get her checked in.
We don't know how we will tell Missy, but when Bruce got home about 11:00 this morning, Missy's little dog, Rocky was out on the side of Wedgefield Road. He had been hit by a car. He must have gotten out when they were loading the car to get to the hospital.
November 15, 2003
They called from Dr. Stuart's office on Friday afternoon and told me that they are putting Missy down for admission on Monday. They will call when a bed is available. (They decided not to admit her this past week because her blood counts weren't good enough, but now they are.)
She'll be there for 3 nights again, coming home hopefully on Thursday. Lendon has said that he'll come and bring her home when she gets out again. She may have to wait for a bed. Who knows. Beds are tight there.
She is feeling pretty well right now. She tires easily, but that awful coughing is gone. Hardly a cough at all, no more than the rest of us with a tickle in the throat.
She is keeping busy, reading and resting. She also gets cards each day. My students are still dropping them on my desk and even some parents have sent some to her.
We took Mikey and Christian for haircuts and I got mine whacked off too. I hadn't taken time to really get a haircut since Missy got sick last year, but since we were taking them, I put my name down too. It sure feels good. I know that I lost a pound getting that gone. We went to the Super Walmart. Pretty good cuts for a good price there.
You will never do anything
in this world without courage.
November 14, 2003
The SCT doctor's nurse. Bonnie, called today and said that they will call on Monday, when they have a bed available in the unit, for Missy to begin her second cycle of ICE. They received Missy's blood count results from Dr. Clowney's office and feel that they can do the next ICE treatment sooner than 3 weeks. (They had thought this Thursday or Friday, but that was less than 2 weeks apart and her counts weren't up enough yet.) So, she'll be back in for 4 days and 3 nights of chemo, with blood pressure, pulse, and temperature checks every 4 hours, being weighed at 4:00 am, etc. Missy is too funny. She told me that the next time that Natasha comes in to weigh her at 4:00 am, that she will tell her, "I will weigh the same thing when the sun comes up because you won't have fed me by then either; breakfast in this place is at 8:00 when your shift is over." The silly voice that she says it in makes it come out so funny.
She is really doing pretty well, since the nausea is over. She is eating pretty well. Mostly I have been making sure that she is getting "good for you" stuff that mama's fix, but last night, she wanted Bar B Que so we got her some. (Here in Sumter that means pork BBQ meat (that was cooked over oak logs) with hot sauce, a side of hash (ground pork meat cooked up with tomato sauce and spices) and rice, slaw and potato salad, and corn dodgers (sort of like hush puppies but bigger, better and no onions in them like when having them with fish.) We have a BBQ place here that is only open on Thursdays, Fridays, and Saturdays. You can eat in, but most folks do take out. One $6 take out plate is enough for 2 people.
You must understand the whole of life, not just one little part of it. That is why you must read, that is why you must look at the skies, that is why you must sing and dance, and write poems, and suffer, and understand, for all that is life. (Indian Philosopher (1895-1986)) - J.Krishnamurti
November 13, 2003
Missy was diagnosed as Hodgkin's Stage I B in September of 2002, and rediagnosed as having progressive disease about a month ago. Her regular oncologist said that she needed to be in a university hospital setting and referred her to MUSC. They determined while she was hospitalized from Sept. 28 - Nov. 4, that she is now Stage III B.
She has received her first cycle of ICE (Nov. 1 - 3) and excepts to have cycle 2 next week. They plan to do them 3 weeks apart, sooner if possible.
We have been told to except 3 - 6 cycles of chemo. We have been told to expect that she will need blood transfusions. They say that they can't really give us a timeline. They hope to do a SCT, but don't know that for sure yet. They told us that the initial treatment is the same for the SCT as the bone marrow transplant.
She is tired right down, sort of down, quiet, naps a lot here at home. What can we really expect in the future weeks, months, etc. as she has more of this high dose chemo. She had a checkup in Charleston on Tuesday. The doctor was pleased with her progress, feeling that the tumor has shrunk some already because her breathing has improved, coughing improved, and vein in neck has gone down. But, blood counts are of course down and time is needed for them to come back up.
Ask, and it will be given you; search and you will find; knock and the door will be opened for you. For everyone who asks receives, and everyone who searches finds, and for everyone who knocks, the door will be opened. Matthew 7:7.
November 11, 2003
Today was a check-up day with Dr. Stuart. Bruce and I took Missy to Charleston. The doctor didn't have to spend a whole lot of time with Missy today. He checked her breathing and of course looked at the fax of the blood workup report that the local oncologist faxed to him.
He was very, very pleased with her lung and breathing. (When she was admitted to the hospital on the 28th, it was partially collapsed and she had an awful seal/barking dog cough, a vein was very prominent on her neck due to pressure from the tumor, etc.) Anyway, today she had been out of the hospital for one week.
He is very, very pleased with her "bad" lung. He was surprised that her breathing is so improved. It really has improved, especially in the past 3 days or so. She could hardly get up the staircase when she first came home from the hospital a week ago.
She is worn out from our trip to the Dr. and back (Sumter to Charleston and back in about 7 hours) and is napping right now.
So, we feel that she is moving right
along. Blood counts looking good, breathing already improved (meaning tumor
has already shrunk some from the chemo and is not pressing so on the windpipe
and that vein). The vein that is popping up in her neck is not so prominent.
He was also pleased with her blood counts. In fact, he had figured that her next treatment of ICE would be 3 weeks from the 1st (which was Nov. 1 - 3), but said that she was doing so well that it could be by the end of this week. They will call on Thursday or Friday, when a bed clears and she is to come that day. (Bed space is tight in the bone marrow unit, only 8 beds.) That means that her 2nd treatment of ICE will only be 12 - 13 days from the 1st. So, she is happy that things are moving along.
She is rather tired from our early morning. We left at 6:00 to make sure that we were in Charleston by 8:45. We got there about an hour early. The traffic wasn't so heavy. Someone said that it was due to Veteran's Day and the government employees not commuting onto the peninsula. We didn't encounter any traffic jams due to wrecks, so it was great. We left Charleston by 10:30 and were home for lunch. Missy napped. My husband, (Bruce went into work); they had a sub for me at the middle school, so I graded some papers and then went in to teach my 4:00 Tuesday grad class (which I had missed for 2 Tuesdays and felt really guilty about, because I had missed teaching them how to load their web pages and of course many couldn't figure it out, but they'll catch up.)
Anyway, she is ready to get the show on the road and get to the transplant itself, but they still won't give us a time line. Just that it will take between 3 and 6 cycles of ICE.
Waiting for Dr. Stuart.
It is only through disruptions and confusion that we grow, jarred out of ourselves by the collision of someone else's private world with our own. - Joyce Carol Oates
November 9, 2003
Missy feels a bit better today. She got out of the hospital on Tuesday. She had 3 days of high dose chemo (ICE), but first they had to clear up some pneumonia so she was in the hospital for a week.
She had the chemo from Saturday to Monday. They call it induction chemo, to see how she responds, how the tumor responds. She was nausea sick for a few day, plus really sore from the neulasta shot at Dr. Clowny's office. (Those build the white count up and make your bones ache and ache.) Her bone marrow biopsy spot is still pretty sore, especially since the shot that stimulates the bone marrow.
She has an appointment in Charleston with her Medical University of South Carolina doctor on Tuesday the 11th. We'll have to get up really early. It's at 9:00 and traffic in Charleston, in the downtown area can be awful that time of day. Hopefully he will let us know then, when they can do the bone marrow transplant. They wouldn't give us a timeline last week.
They that hope in the Lord will renew their strength, they will soar as with eagle's wings; They will run and not grow weary, walk and not grow faint. Isaiah 40:31
November 5, 2003
Missy went to Dr. Clowney's office today and got the neulasta shot. She coughed up some lump of stuff and all of a sudden her cough is so much better. There must have been something left down in there from the biopsy. She said that it was tube shaped, gray looking, fleshing, with blood vessels hanging off one end, but she flushed it. She coughed it into the toilet thinking it was a loogey.
The place where they did the bone marrow
biopsy really got sore , after the neulasta shot they gave
During the night, she got up and began throwing up. We realized that they had not given her any nausea meds. She settled down and was up again at 6:00, just feeling nauseated. So, Mama called the number on her release paperwork and got hold of the fellow who released her from the hospital. finally. He was very apologetic for his oversight of not writing a prescription for nausea meds. My mother stayed with her today, so that I could teach school, so she ran and got that filled once it was called in.
She was feeling puny last night and this AM, with the nausea, but she has that under control now and is much perkier. (Not running marathons, but perkier.) Once she got the nausea meds into her system, she got to feeling better. She had to go to the local oncologist's office today at 2:30 for a neulasta shot so she really needed to be able to ride in the car.
She has been eating tomato or chicken noodle soup on and off all day. She is drinking iced tea and Gatorade as well as lots of water.
My mama made her a banana pudding. She has been eating that between soups. She said that the only two things that the hospital fed her that she liked were a cheese danish (the size of a silver dollar) and banana pudding, so Mama made her some pudding.
Her cough is much, much better. This afternoon she coughed up a wad of flesh like stuff that must have been from the biopsy that was done via the bronchoscope. Since then, the cough has not sounded like a barking seal.
She goes to Dr. Clowney again on Friday for blood work, the results of which will be faxed to Charleston.
We are each of us angels with only one wing, and we can only fly by embracing one another. - Luciano de Crescenzo
November 4, 2003
Missy came home from the Medical University of South Carolina Hospital today. She was released about 3:30 and arrived home about 5:00. She got home with 4 prescriptions: Ambien, oxycodone, coumadin, and cough syrup. She was ok but tired out.
Her salvage chemo is ICE with Mesna to protect her renal system. She had what they call induction chemo from Nov. 1 to Nov. 3.
She is now at Stage III B. (Originally this time last year, she was Stage I B). The disease is now on both sides of the diaphragm and in her abdomen. (Before it was one one side of diaphragm and no where else.)
Blood tests look ok. Bone marrow results not back yet.
The plan is 3 - 6 treatments of salvage chemo and auto SCT.
Next appointment in Charleston is for Nov. 11 with Dr. Stuart.
She is to be at Dr. Clowney's for a neulasta shot on November 5 at 2:30. Then she will go to his office on Friday for blood work, the results of which to be faxed to Dr. Stuart.
Chemo will be done as an inpatient and then she will come home for the time in between.
Courage is resistance to fear; mastery of fear - not absence of fear. - Mark Twain
November 3, 2003
The blood clot is better with the blood thinners. That tumor pressed on the vena cava before it started shrinking back when... She was on blood thinners once before during treatment. They seem to have it under control.
She hopes to go home tomorrow. Lendon is too bring her home if they release her. If things don't work out that way, my mother and I go back to Charleston to bring her home.
Missy had bone marrow drawn on this past Thursday. They did it while she was in her hospital bed. Her hip area has been sore, but it's not so bad now.
They won't give us a time line yet. They have said that it will take 3 - 6 cycles of chemo, based on how her Hodgkins responds. They will be 2 - 3 weeks apart, most likely 3, based on blood counts. They have advised us that she may very well have to have transfusions, etc.
November 2, 2003
They are checking Missy's urine every 8 hours to be sure that there is no blood and they are checking for something called zero gravity. She felt some nausea today. This is chemo day 2 of cycle 1 of the ICE treatments.
Security is mostly
a superstition. It does not exist in nature,
We met with the Dr. Frie-Lahr (the lady one)
yesterday and discussed the chemo. They started the chemo today (Saturday).
Bruce and I spent Friday evening until about midnight with Missy,
then went to the Howard
Today was Day 1 of chemo cycle 1. This cycle lasts 3 days.
She handled the chemo today very well. They told us that it wouldn't be a problem. No sickness. The first day is easy. After a while it may build up. Since they started on Saturday, not Friday, she will be in the hospital until Monday or Tuesday. She will have chemo on Monday, so it maybe Tuesday.
Missy will have this chemo every 3 weeks (maybe 2 if her counts do well) for up to 6 cycles. She could have as few as 3 cycles of induction chemo. All of this is based on how well her tumor responds. One tumor is pressing on a large vein and interfering with blood flow as well as with breathing.
No PET scan results yet. Nor the bone marrow. Bruce asked, about whether the results would change treatment options, but Dr. Frie-Lahr explained that test results wouldn't alter the treatment, just give more info and determine the stage she is now. (She was I B last year. That is why this is so surprising. You would sort of expect a I B to be one who was cured by the original treatment protocol.)
The chemo that she is getting goes by the acronym of ICE. I have read about it. I will be looking into it more. They don't know how many cycles it will take. It all depends on how well she responds to the treatments. It is usually 3 to 6 of these treatments.
The object is to shrink the tumor or make it stop growing. The result is that usually the current symptoms are relieved and new symptoms due to the tumor are prevented.
"Reality isn't the
way you wish things to be, nor the way they appear to be,
October 31, 2003
The PET scan was done today. Missy had to be transported by van across the street to Roper Hospital where the machine is located. The entire ordeal took 3 hours. At least they gave her something that kept her relaxed throughout the entire event. She was starving from not eating all day. They gave her a juice box and Nutrigrain bar as soon as she came out of the machine.
Missy was running a fever today. They added more antibiotics by IV. At about 9:00 P.M. , they took her down for a chest xray.
"Great occasions do not make heroes or cowards; they simply unveil them to the eyes of men. Silently and imperceptibly, as we wake or sleep, we grow stong or weak; and at last some crisis shows what we have become." - Brooke Foss Westcott
October 30, 2003
Dr. Smith did the bone marrow biopsy. It was very painful for Missy. Then she had to start drinking the gallon of stuff to clean out her innards for tomorrow's PET scan. She is in pain from the bone marrow biopsy.
Inspire me with love for my art and for thy creatures. In the sufferer let me see only the human being. - Moses Maimonides (The Physician's Oath)
October 29, 2003
At 8:00, Dr. Smith reported to us about the CT scan. He said that it looks basically the same as the one done a couple of weeks ago in Georgia. The mass is a little bigger. They have found a blood clot, so she needs to be put on blood thinners.
At 11:00, the pulmonary doctor did a biopsy to confirm whether the was Hodgkin's back. (He is German, very business like and gruff. Not her favorite at the moment.) It turned out to be a terrible experience. She came to while it was going on and they had to hold her down. She told me that she kicked one of the doctors, really hard, but doesn't know which one.
Dr. Doby, who assisted Dr. Doelkin, reported to us that they were able to get some tissue from the lymph node, as well as some washes. They will have a report back in 24 hours. Some other cultures will take up to 4 weeks.
At 3:30, Missy was taken down for an echocardiogram. They weighed her at 4:30. She weighted 75.7 kg. (About 156 pounds.)
A 4:45, Dr. Smith told us that he will do a bone marrow biopsy tomorrow. He also told us the preliminary results from today's biopsy (fast) show that it's the Hodgkin's back. At PET scan is planned for October 31. She is probably get to go home in 5 - 7 days.
She starts high dose chemo Friday night. PET scan tomorrow. Has had fresh CT scan, echo, etc. Seems like they want everything new.
We have been told that her x-rays and CT scans are: amazing, fascinating, unusual. She has something going on besides the tumor. They are figuring that out.
Then we go from there. The plan is to hopefully do the auto transplant.
She is pretty miserable right now. A bit of pneumonia, a bit of lung collapse. She has a blood clot. They are taking care of all that before the chemo starts.
One amazing thing is that one of the med students turns out to be someone that she knew in high school from being in the choir. He was 2 years ahead of her, but they have chatted about the times that they traveled to Mexico to sing on Mexico Today and to New York to sing at Lincoln Center. Eric Belin is in his last year of med school. The fellow on the hemo team, Jamey Smith, turns out to be the son of a Sumter gynecologist. Then another medical student turned out to be from Sumter too. They have made Missy feel more at home, because they are from her hometown.
"I'm scared today,
but when comes tomorrow, my heart will not know sorrow. I will not know
fear, and cry no tears, tomorrow I am stronger." -Jennifer Hiykel
October 28, 2003
My daughter, Melissa, Missy Sutton, was admitted to the Medical University of South Carolina hospital in Charleston today. She has been seen by every sort of doctor there. She is the new circus in town for the medical students.
Stuart examined her today he noted a vein that is popping up on the
right side of her neck. The also said that the mass is compressing the
main windpipe which has caused a partial collapse of her left lung. He
said that when a young person's relapse of Hodgkin's happens this fast
that the next step is high dose chemo with a transplant. His first choice
would be an autologous transplant and his 2nd choice would be with a sibling
donor. He is concerned about the lung and is calling in a pulmonary doctor,
Dr. Dolekin. He will do a brochoscopy.
Dr. Stuart also explained that usually chemo is started as induction therapy, to see (predict) how the patient will do on high dose chemo. They will do as much as possible outpatient. (There is housing for patients for when she has to come into the clinic each day, so we won't have to commute from Sumter each day.) Dr. Clowney in Sumter can do follow up blood work and fax the results to Dr. Stuart. Dr. Debra Frei-Lahr is on the team, a fellow (Jamey Smith) is 2nd in command. There is a nurse practitioner. Dr. Stuart and Frei-Lahr rotate on a monthly basis heading the transplant team. They always work closely together. Dr. Frie-Lahr is the attending physician for October and Dr. Stuart will be attending in November.
A CT is planned. Dr. Frie-Lahr prescribed steroids as soon as she saw Missy in the hospital today. Dr. Smith ordered that the steroids be given every 6 hours. They also began to give Missy morphine.
The pulmonary doctors examined Missy at 4:45.
At 4:57, she was wheeled down for a 5:00 CT scan.
She is a trooper. Bought some pants that say "TOUGH" on the back back in Sumter and made sure to wear them today.
According to Missy's Aunt Kim Sutton, who works in research at MUSC, Missy's doctor has been on the top 100 doctors list for about 10 years. He has been at Sloan Kettering and John Hopkins in the past.
Let your life lightly dance on the edges of Time like dew on the tip of a leaf. -Tagore
October 17, 2003
Today, Missy saw Dr. Clowney. He will be her new Sumter oncologist. She liked him. He was very thorough. He gave her a prescription for antibiotics and for pain medication. She is coughing so much and appears to have infected tonsils. He sent her over to Tuomey Medical Center to have an ultrasound of her lung. Dr. McCormick had told me that it needed to be drained by today. Tuomey did not find any fluid in her lung. There just isn't any there.
October 16, 2003
Tomorrow morning, Missy will see her new Sumter doctor, Billy Clowney. They were great about getting her in. He will check her lungs.
Richard Blackmon (Ricky) is working on getting all of the legal papers that Missy needs in order. It's a lot more paperwork than in Georgia. He got the Power of Attorney back to me today, via his wife, my friend, Leah. Missy did a will upon Ricky's advice, leaving any assets to the children and me as their guardian. Ricky assured her via Leah that in 21 years of practice that the people who did a will didn't need one. It's the ones who don't have a will that needed it.
I will return to work on Monday, and go from there.
I wanted a perfect ending... Now, I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious ambiguity. - Gilda Radner
October 15, 2003
Now, the newest news. We were quite taken aback this afternoon. Missy will be treated in Charleston, not Columbia. I questioned her Georgia doctor about that on Friday. I asked him if it was Charleston, and he said Columbia. Even his nurses talked to me about Columbia on Monday and Tuesday, telling me that they were faxing the paperwork to Columbia and that the doctors there would be calling us, to stay by a phone. So, I gave them my home number and cell number and have been waiting, waiting, and waiting.
When they had not called by this afternoon, I asked Missy's grandmother in Georgia to call the office and ask them to get a phone number for so that I can call the new doctors. As soon as she called me back with the phone number and it had an 843 area code, I knew that it was on the coast and that it had to be Charleston. I called and verified that I had MUSC in Charleston. (The number was direct to someone's desk there, a Mrs. Gregg.)
I explained to her that Missy's Georgia doctor said that he wanted her in the hospital this week and that he said that her lung needed to be drained by Friday. Well, she said that they don't do that unless the patient is already under their care and that her current doctor needed to do it. I explained that her current doctor had advised us to get her to South Carolina as soon as possible. We did that and that it was a 6 hour trip to her old doctor from Sumter. She gave me the names of some oncologists in Sumter to choose from. I will call the Georgia doctor tomorrow and get them to call Dr. Clowney here to get her lung drained. I hope that he can do it on Thursday. If not, we will go to the emergency room if needed. Missy insists that she is ok now, just tired. Coming up and down the staircase to her room is very hard by the end of the day. (She won't sleep anywhere else but upstairs in her old room. We tried to get her to take our room downstairs, but she wants her room.)
The appointment in Charleston is October 28. Missy is very upset that it is so many days away.
She is feeling better today. Yesterday and last night she ran a fever, which we treated as instructed with Tylenol and lots of fluids. No fever today, just tired and with one lung having fluid in it, coughing and getting out of breathe a lot.
Missy is also upset about the timing because she figured to be out of the hospital by Christmas. She may not be now.
For I am mindful of the plans I have for you, says the Lord, plans for your good and not for evil, to give you a future and a hope. You call upon me and come and pray to me, and I heed you. You seek Me and find Me: Now you seek Me with all your heart and I am at hand for you, says the Lord... - Jeremiah 29:11-14; Matthew 7:7
October 13, 2003
Missy is now officially, once again a South Carolina citizen with a South Carolina driver's licence and a Sumter County Library card. She is exhausted from all of our travels from office to office getting things straight today.
Every time you meet a situation, though you think at the time it is an impossibility and you go through the tortures of the damned, once you have met it and lived through it, you find that forever after you are freer than you were before. - Eleanor Roosevelt
October 12, 2003
Today was moving day. We drove Missy and Mikey back to Sumter today. Christian was already here, visiting. We brought the chihuahuas and her two cats. The cats rode with Bruce and me in Missy's Kia Rio. The little car doesn't have radio, but we had a cat chorus for hundreds of miles. They were not happy in the cat cage. Chip and Scotty helped with Chip's truck loaded to the hilt; Tommy was there with his truck and we loaded it. We loaded Mama's SUV with Missy, Mikey, and more stuff. Flex, Missy's Dalmatian, stayed in Adairsville. He can come later.
October 10, 2003 Not a Good Day
Today, we found out that Missy's Hodgkins is not in remission.
Today was an inservice and a workday for me. I conducted an inservice this morning on communicating with parents using email and IGPro. I was leaving school to go to lunch and my Jeep was hit when I backed out into Miller Road. (I've been backing out into Miller Road like that for over 14 years. It's hard to see, and I eased out like always, but the car that hit me was going pretty fast and didn't slow down to let me out like folks do in front of Alice Drive Middle School.) I got my first ticket ever and a $150 fine. [I went to traffic court a few weeks later and the charges and ticket were dropped so my driving record is still clean.] A little while later, I found out that Missy was not in remission. I'd had the cell phone on because Missy's appointment was a morning one. I'd called Mama to see if she had heard from her and she hadn't. Mama promised to stay home by the phone. I called again and Mama didn't answer her phone, so I called her cell phone and she answered. She told me that she was on her way to the school. I knew..... Mama wouldn't tell me anything, just that she was on her way. Wanda and Mike were with me. I was in Wanda's classroom. Soon, Leah, Christine, Rob, Brenda, and the person that I needed the most right then, Beverly, came into the room. Mama came and confirmed what I had figured out when she would only tell me on the cell phone that she was on her way to the school.
Mama took me home and I called Rome. Missy's oncologist, Dr. McCormick, says that she needs a bone marrow transplant and asked about siblings. I told him that she has one brother, 21 years old. There is a 25% chance that he is a close enough match. She needs to be treated at a medical university setting. Dr. McCormick says that she can be treated in Columbia. I questioned him about that, asking him if he was sure that it was Columbia and not Charleston. He says Columbia.
When I talked to Missy, she agreed to come home to Sumter. She also wanted to know about her brother Sean being willing to donate bone marrow. I told her that I knew that he would without even asking him. [Later when Sean got home he said what of course I knew that he would, "When and where do I go? As it turned out, Sean's marrow wasn't needed. Missy's disease had not spread to the bone marrow. They will do an autologous stem cell transplant using her own stem cells.]
Annette, Frances, and Stephanie came to the house as soon as they found out. They had been out of the building when I found out.
We will go this weekend and move Missy home
to Sumter. Carolina Girl is coming home from Georgia.
change the direction of the wind, but we can adjust our sails.
Thank You Page (coming soon)
Photo Gallery (coming soon)
is part of your life, and if you don't share it,
Missy in October 2002 with
some of the cards that my students sent to her.