Missy's Story

March 12, 2004

Missy had a bit of an upset stomach, so I called Dr. Smith. He called in a prescription. We don't want to deal with C. dif. again.

He told me that he had talked with Dr. Stuart at 2:00 and that things were being set into motion for the arrangments for the transplant. The bone marrow transplant coordinator is working on getting everything set up. Dr. Stuart should call us on Monday. Dr. Smith said that he would call us this weekend to check on how Missy is feeling.

March 11, 2004

We left Sumter about 8:00 so that Missy was on time for her 10:15 CT scan appointment. They took her back about 10:30 and she was back out 10 minutes later. This was the first time that they have done a CT scan on her without an IV. We went to California Dreaming for lunch. Missy loved it. Our table overlooked the Ashley River. We could see all sorts of boats, anchored and moving, but the best part was a group of about 6 dolphins putting on a show for us. Missy has always loved dolphins.
She had a great time.

With her doctor's appointment not until 3:30, we had a lot of time to kill. We went to Folly Beach, parked at the county park, and walked out onto the beach. It was so windy and we were cold. Missy had her heavy coat on, but I only had on a leather jacket. We didn't stay out there long. We drove back over the James Island connector and then on down into Charleston to the Battery and then we just explored various streets that we had never been down before.

We arrived at the doctor's office an hour early, deciding to sit and read in the waiting room. About 3:00, Missy was called back so that Bonnie could draw blood from her PICC line.

Dr. Smith came in, talked with Missy and checked her breathing. He said that her labs weren't back yet.

They were pretty busy, so Dr. Stuart didn't get in to see Missy until 4:45. Dr. Smith  said that her blood counts were great. Dr, Stuart explained that the CT scan showed that the tumor had shrunk even more. He attributed the response to the plantinum in the ESHAP.

He explained that Dr. Frie-Lhar was out of town and the bone marrow transplant coordinator was not there, so he couldn't really get anything set up until her got together with them. He said that they might decide to do another ESHAP before the transplant or they might decide to proceed to transplant next week. He will let us know.

So we headed back home. Boy, is the 5:00 traffic something. I'm just glad that we don't have to go over the Cooper River Bridge. The on ramp to cross the Cooper was really backed up.

We arrived at my brother Timmie's house at 7:00. Today is his son Scotty's 21st birthday. Cake and ice cream were at 7:00 and we just made it.

We went out to eat at Outback. Missy wanted prime rib. She ate almost the entire 8 ounces of meat. We had a blooming onion and she ate her share of it, as well as bread, and most of the baked potato. She is feeling great. We all said that we ate so much that we should eat cereal for supper tomorrow night.

March 6. 2004

Jamey came to visit. He wanted to go to Fu Garden after hearing about it, so Missy took him there for lunch. We made tacos for supper. Missy made fresh gacamole dip. She ate great again today. She is really feeling well. It is amazing to me how much more energy she has already.

March 5, 2004

Dr. Smith called and told Missy that her platelets are rising, so she won't have to come to Charleston this weekend for a blood transfusion. We went out to eat at Fu Garden. Missy ate a lot. She enjoyed the outing. She wants to go out to Outback to eat some steak before she has to go back to Charleston on the 11th. We decided that we will eat there on Sunday for supper.

Missy took her two dogs, Angel and Flex, to the vet for their yearly shots. She called, made the appointment and took them today. She said that Dr. Bell got someone to take Flex to the car for her. He weighs over 60 pounds. He is a big dalmation. Dr. Bell was worried that he was pulling her all around.

March 3, 2004

Missy's blood tests today showed that her platelets had dropped a little more. Dr. Smith wants her to have another test on Friday. If her platelets drops, he wants her to come to Charleston to be admitted overnight for a blood transfusion. Missy's energy level sure has increased though. 

I was amazed that after school, when I was in a math meeting, that the room where we were meeting was called and Lynn (the school secretary) told me that Missy was in my room. She had driven herself to town. She needed some cash to go shopping for some clothes. She did too, all by herself. She went to Goody's and bought some clothes and a straw hat. With the temperature rising into the 80s this week, the knit hats are way too hot to wear.

Bruce and I took Missy to  Charleston for her blood work appointment. They were pleased with the results. Her platelets were a little low, but her hemoglobin was normal and so was her white cell count. Dr. Smith wants her to have another blood test in 2 days to see how things look. He wanted her to come to Charleston for it, but agreed to let Dr. Clowney do the test and fax the results to him.

Missy had a nuelasta shot at Dr. Clowney's office today. She still isn't eating much.

Missy was released from the hospital. Bruce went to Charleston to pick Missy up. It's Tuesday, so I had to teach the computer class from 4:00 - 7:00. She wasn't released from the hospital until early evening. So, ESHAP cycle 2 is over. She has to go to Charleston on March 1. Dr. Smith says that he wants her back in Charleston  after  about the same span of time that she got sick after the other ESHAP treatment. (That way, they can catch anything that might be starting to happen with her white count, before she gets really sick.) Her next appointmentin Charleston after that is on March 11. She'll have a CT scan that day and see the doctor. 

My cold is still with me, so I went to the school inservice scheduled for today. (Good thing, because I had the lesson plan stuff in my book bag that saved a lot of time for the math departments of the 3 middle school and for the science folks who were helping the math department.)

Bruce went to Charleston. He got Missy a good lunch from Marvin's BBQ over on James Island. He took her the hash from Ward's BBQ that I picked up last night. (Only Ward's has good hash.) He said that she ate well. He also said that she has gotten breakfast in the hospital figured out. She ordered eggs, ham, and toast with mayo on the side. She made a sandwich out the stuff. The mayonnaise made it easier to eat. It gave it a little flavor. Those eggs must be powdered eggs. The ham is not great either, very thin, like sandwich ham, not like breakfast ham.

Bruce went to the grocery store and got Missy some Bryer's strawberry fruit on the bottom yogurt to leave at the nurse's station. She keeps ordering yogurt with her meals and it's blueberry every time. She does not like blueberries in anything but says that she was eating it for the benefit of the bacteria.

He also got her some potato chips from Eckerds. She says that the salt helps cut the chemo taste in her mouth.

The c. dif. problem has cleared up. Ten days of the medication must have been what it took.

Bruce got home around 6:30. He said that Dr. Smith said that I could visit with a mask and washing my hands, but it worries me that I might carry an infection to her. Bruce said that they put a sign on the door "This patient is at risk for infection." That means that the nurses have to wear gloves. It must be because of the c. dif. It's spread in a hospital by way of spores getting on the hands of the nurses or techs and being taken to another room. One website that I read said that many patients  who have been on antibiotics and are hospitalized for any length of time get it. Healthy people can carry it and not get it, but can spread it to others.

February 20, 2004

I woke up this morning with a cold. I sure hope that it's gone by Tuesday. If it's not gone tomorrow, I won't be able to visit Missy in the hospital over the weekend. 

February  19, 2004

The appointment for Missy's CT scan at MUSC was at 11:00 today. I took Mikey to school, came back home, and got Missy's things loaded in the car. We were told to bring her ready to be admitted. We arrived at 10:30. I dropped Missy off at the horseshoe at the front entrance of the hospital. She said that she was too sore (from giving her dog a bath and blow-dry) to walk from the parking garage. The c. dif infection has really taken a toll on her energy. I snagged a wheel chair from the admitting area waiting room and wheeled Missy to the 3rd floor via the D elevators where the CT scan waiting area is located. She signed in at 10:50. The lady at the desk remembered her. She brought Missy a blanket because she said that she looked cold. (It was pretty warm. Missy had her jacket but had left her big coat in the Jeep.) Missy wasn't taken back until about 11:25. They were having a lot of trouble with a child needing a CT scan. He was crying, screaming, hollering, etc. You could hear him from all over. Once Missy got back there, she heard one of the tecs say that the child needed to be told by his parent to settle down. Maybe he even needed a spanking. The mother was just standing there, not saying a word. No comfort, no admonishment, nothing. I noticed the father in the waiting room with the sibling. That kid was just running all around, being ignored too. The parents will wonder some day why those kids are getting in trouble at school. Well, they were ignored by their parents when their were little.

Once Missy's CT scan was over, we decided that the best thing that we could do for lunch was eat in the hospital. Missy was to tired and sore to deal with getting back in the car and going someplace to eat. It was noon and very crowded in the cafeteria. We could not find an empty table, so we went back out to the main lobby with our food and at there.

Once were were finished, we decided to go on over to the Rutledge Tower where the doctor's office is located. We were getting a little cold in the lobby, with those revolving doors letting in  a draft near where we were sitting. 

I pushed Missy in the wheelchair via the inside route through the over the street bridge to the Tower. It was very warm sunny in the bridge. We stopped for a few minutes to watch the construction going on.

We saw Dr. Frie-Lahr's clinic nurse, Cindy, in the elevator. She recognized and spoke to Missy. We arrived at the Bone Marrow Transplant Clinic reception desk about 1:00. I told them that we knew that we were very early, but that we would jut sit in the waiting room and read until time for Missy's 2:30 appointment. We got settled by the window and enjoyed the view for a few minutes. Before we even had a chance to start reading our books, Dr. Stuart's nurse, Bonnie came out to check on Missy and tell us that they already had her room ready at the hospital and that she would get transportation to take us over to the hospital. She felt Missy's head, concerned that she might have a fever, but Missy was fine. Maybe the wheelchair worried Bonnie. She didn't know about Missy's sore hamstrings from washing the dog. Plus, Missy hasn't been out and about in 6 weeks or so. She tires quickly right now.

So, a man showed up to wheel Missy back over the the hospital. She got settled in her bed. Her nurse was Laura, along with a new graduate, Hittle. Dr. Megan Mulligan came it not long after Missy was settled. She gave us some good news. She had looked at Missy's CT scan and saw improvement. She said that she is not the expert, but that the new CT can looked much better than the old one.

We talked with her about the c. dif. She wanted to make sure Missy received the rest of the medication for that while in the hospital. She also agreed that eating yogurt is helpful for c. dif.

Dr. Smith's had really good news about the CT scan. The tumor has shrunk from 7 cm to 4 cm, due to the ESHAP. That indicates that the ESHAP had really made a difference, so they will go with another round of ESHAP, starting tomorrow. This will be a 5 day cycle again, so hopefully, she will be able to come home on Tuesday.

I arrived home about 6:30.

There is no medicine like hope. No incentive so great, and no tonic so powerful as expectation of something better tomorrow. ~ Orison Swett Marsden

Missy got out of the house today. Mama took her to the pet store. They figured that there wouldn't be very many people there and she really needed to get out a bit. She purchased some shampoo for her little dog and gave her a bath. The weather got a little iffy late this afternoon. It was thought that there might be some ice on the roads from the rain. After school activities were canceled so people were emailing me about the computer class. I decided to send the students my lecture on PowerPoint by email to view in case we has to leave early, and to hold class, leaving before it got dark. Everyone was satisfied with that. That meant that I was able to get home early and cook what Missy wanted to eat for supper. She had taken some shrimp out of the freezer and wanted them sautéed with onions and garlic and served over rice. She didn't eat much of it at first because she had eaten a can of Chef Boy Ar Dee ravioli not long before I arrived home. That was a pretty big meal in itself.

The Intruded nurse came today. I am now a PICC line dressing change graduate. We talked with her about Missy's c. dif problem. She agreed that eating lots of yogurt would be helpful. Yogurt with fruit on the bottom has lots of the good bacteria needed by the intestines. She suggested that Missy say that she is allergic to clydamicin when they ask about allergies. She told us that she was in the bone marrow transplant meeting on the Thursday that Missy was in ICU and had heard about how sick Missy was there. We didn't realize that an Intramed nurse attended those weekly meetings too.

February 14, 2004

Missy  has eaten more today than I have seen her eat in 2 or 3 days put together during the past month. She wanted cereal and fruit for breakfast, then a corn dog from a special place here in town (County Fair) that makes them up from scratch and cooks them when ordered, for lunch, then a snack of yogurt, and then I made chicken and dumplings for supper. She ate what I put on her plate and got a spoonful more of the dumplings after she ate all of that. We had them over rice with LeSuer peas on the side.

It feels great to get excited over seeing her eat. I have been pestering her about food, asking her what she wants, getting things to keep in the nurse's station when she was in the hospital, having stuff here at home that I thought that she would eat, yet she would hardly eat.  Finally, I feel like she ate a meal tonight.

Today we still kept trying to find out when Missy's next appointment is. Mama called. I emailed the appointment lady, and I called again when I got home. Right after I got home, Tabetha, the appointment lady called and said that the appointment will be on February 19 and that Missy will be admitted on February 20th for more treatments. She said that Robin, Dr. Stuart's nurse would call later. Robin called a few minutes later and confirmed the times. Missy is to be in the main hospital for a CT scan at 11:00 on the 19th. She will see Dr. Smith at 2:30. She will be admitted that afternoon so that they may start another cycle of ESHAP early on Friday morning. Robin said that this is so that she doesn't have to be released from the hospital so late. (After that other cycle of ESHAP, she was released about 8:00 at night.)

February 12, 2004

Missy's discharge papers say that her next appointment is on February 20. There was no time listed, so I asked Mama to call to find out. They were to call back, but never did. Dr. Mulenburg called this morning to let Missy know to not take the Tequin prescription, that she was calling in a different one. One of the tests came back positive showing that the antibiotics had messed up the flora in Missy's intestines. She has something called c. dif. This must be what is causing the stomach pain and nausea.

February 11, 2004 Home from the hospital, again.

Missy came home today. She finally ate some food for them so that she could come home. She showed the doctor the awful breakfast that had been sent to her. (No one could identify what the food was. They really could not. Missy described it to me as a gray square of something. Could it have been French toast? Missy swears it was scrapple or some such thing. They were supposedly sending her soft food.) The doctor had the nurse order Missy cold cereal, fruit, and eggs and they watched her eat it. By then it was almost lunch time. Missy promised to eat lunch once  of the hospital, so they turned her loose. Her Granny was there and brought her on home. I didn't even know that she was coming home today until I got home from work. They stopped at a Pizza Hut and Granny went in and got a couple of personal pizzas to go. Missy ate pizza. That's after exiting on IV food and bits of fruit for almost a week.

February 8, 2004

Missy was moved to a regular room today. Her white count is 13,500. (Nuepogen shots.) She no longer has a fever. She hasn't eaten much and has been on nutrient via her PICC line for a couple of days. They still don't know what caused all of this. They will keep her here for a few more days, until she is eating normally.

Who knows how long this delays the stem cell transplant again. She just wants to get it done.

Missy's blood pressure is normal. They took her off the special medicine about 1:00 this morning. Now it has to stay normal for 24 hours on its own. The nurse told Missy that she is the most active patient in ICU and that she is like a monkey on the bed, moving around, getting herself on her own bedpan. They are used to inactive patients. 

Missy looks much better. They have given her some blood and platelets. Her blood pressure and pulse have also improved. Jamie got here before supper time.

Nothing worth doing is completed in our lifetime,
Therefore, we are saved by hope.
Nothing true or beautiful or good makes complete sense in any immediate context of history;
Therefore, we are saved by faith.
Nothing we do, however virtuous, can be accomplished alone.
Therefore, we are saved by love.
No virtuous act is quite a virtuous from the standpoint of our friend or foe as from our own;
Therefore, we are saved by the final form of love which is forgiveness.

Reinhold Niebuhr

At about 4:00 this morning, they told me that they would most likely have to move Missy to ICU. Her blood pressure had dropped to something over 36. I don't recall the top number. The ICU resident came down to check her over. He told me that there were no beds in ICU available, but that there was someone scheduled to come out in the morning and they might have to do some shuffling. At about 5:20, they made the move. Her blood pressure had dropped to something over 29. They told me about a medication that they needed to get her on that could only be given in ICU because they would have to monitor her blood pressure every 10 minutes. I scrambled, got our things together and out of the door we flew to the 4th floor. They had someone lead me to the waiting room, promising to come and get me once she was settled. They never did and I was lost, with no one to ask until the ICU waiting room attendant came to work at 9:00.

I called home and let everyone know what was going on. The ICU waiting room had a number of people sleeping on the floor and in chairs. The lights and TV were on. I just pulled the blanket that I had from the car over my head and hid. I was next to a phone and let Donna know the waiting room telephone number.

I finally got to see Missy at about 10:00. She was hooked up to a machine that checked her blood pressure, pulse, and oxygen level every ten minutes. Her blood pressure was still up and her pulse was very high. 120 + beats per minute.

I stayed in the room with her until they ran me out.

My mother, brothers, and sister in law Brandi got there first. They let everyone visit, 2 at a time. Bruce and Chase got there later on, and they visited. (Missy told me later that everyone showing up scared her. She thought that she was a goner.) Her blood pressure improved. The doctor explained to me that her blood pressure would have to get the an average of 55 or higher and stay that way without the medicine for 24 hours in order for her to be moved back to a regular room.

Missy said that Dr. Stuart came in and listened to her heartbeat. She says that he did not know that she knew that he was there. He didn't say anything, so she thinks that he figured that she was asleep. I wondered if she really saw him, because we were told that he was out of town. They had told us that she could hallucinate and to let them know if she did. I asked Dr. Smith if Dr. Stuart had been there and he said that Dr. Stuart had come by so she wasn't dreaming that.

She did hallucinate some. She told me to take the Michael Jackson CD out of the CD player. I told her that I would. (There was no CD player and we don't have any Michael Jackson music.) Chip witnessed that one.  She also told me to tell the little man to get off the foot of her bed. I shooed him away and told her that he was gone. Bruce was there too and he told her that the little man probably had the wrong room.

She told me later that there was a male nurse at some point during her stay in ICU. She said that he kept showing up at the end of her bed and she would tell him to go away. He must have been a night nurse, when we couldn't visit, because I didn't see a male nurse taking care of her in ICU.

February 4, 2004

Missy was running a 102.6 temperature this morning. She was also throwing up. We of course went to the emergency room. We were in the Sumter emergency room all day. Blood tests showed Missy's white count to be 1. They posted a nuetropenic precautions sign on the door to her emergency room cubicle. After that, everyone who entered the room had to wear a mask. The doctors in Charleston wanted her brought by ambulance, and were to call back when they got a bed for her. Eventually, the emergency room doctor told me that if they didn't call by 4:00, that he would have her admitted to a room at Tuomey. About  3:30, when Charleston finally had a bed open. (They can't transfer until the sending hospital has a room number in the receiving hospital. We found out that that is the law.) With only 8 beds in the transplant unit, they are tight and someone had to go home before they could call to let Tuomey know the room number.

The ambulance left about 4:00.  Mama and Missy's  cousin, Chase, stayed and saw her off. I went home to pack and take a shower, so  I was about an hour behind her getting there in the Jeep..

She was still her joking, cute self when  got there. She said that she now knows how to get an ambulance driver to "put the pedal to the metal." All that you have to do is throw up in the ambulance. (In a bucket, but it had to ride all the way to Charleston too.)

Her white count was 1, hemo 9, and platelets 26. That was in Sumter. Charleston is going to redo the tests. She has had nausea, upset tummy. She had a nuelasta shot on Thursday. They have always brought her white count up. This time it didn't work, or something else is going on.

January 30, 2004

Missy is still very, very tired. Some nausea lingers, but not as much as yesterday. She ate more today than yesterday. She sort of picked at her meat. She is better able to handle eating carbs. (Even chicken is hard to digest.) She has dark circles under her eyes and still has to put forth a great deal of effort to go up the stairs.

January 29, 2004

Back to school. We found out that they canceled school yesterday because there were still many streets with downed trees and limbs, power lines too. It would have been dangerous for the buses and children. Some of our students still don't have electricity back on in their homes. 

Mama took Missy to Dr. Clowney's office for the neulasta shot today at 2:30. She is exhausted from the trip. She says that she has never felt so tired so many days after chemo.

Missy's next appointment is on February 12. That is on a Thursday. I emailed the appointment person at Hollings Cancer Center to make sure, because the appointments have always been on Tuesdays before because that is when Dr. Stuart's clinic day it. She emailed me back, letting me know that the appointment is on Thursday. They are doing a clinic together on Thursdays.

She still has some nausea. Either ESHAP is harder to get over or this chemo cycle is going to be harder to get over  because of having to get over pneumonia first.

January 28, 2004

No school again today. That was great. It gave me a chance to stay at home all day with Missy. She is very, very tired. Going up the stairs is a chore. She says that each trip is easier. She ate small meals today and a good supper. Bruce went out and picked up an Arby's cherry turnover when she said that she would like some sort of pie.

An Intramed Plus nurse, (Phyliss) came today to show me how to change the dressing on Missy's PICC line catheter and how to flush it with saline and heparin. It has to be flushed every day. The dressing has to be changed once a week, so the nurse will come back on next Wednesday at 4:00 to lead me through that one more time. The flushing part is pretty easy to do.

January 27, 2004 Last day of ESHAP - Home from the hospital.

Missy is home. They called from MUSC about lunch time and said that she would be released between 8 and 9 PM. We were sort of frozen in here in Sumter. There was a big ice storm. No school today or yesterday. We waited a bit for it the thaw and then headed for Charleston about 2:30. The roads were free of ice. There were some downed limbs on some streets near our house, but I drove around then. On the return trip, they were gone. Missy's next doctor's appointment in Charleston is Feb. 12th. We'll find out then about the transplant rescheduling then. She is pretty weak. She had a tough time climbing the stairs to her upstairs bedroom last night, but she made it. She has been in bed mostly for over 2 weeks, with just trips to the bathroom (one downstairs visit with me on the 19th but that was it)  plus just finished 5 days of chemo last night at 7:30. She is doing well from that though. No visible nausea today. She has Zofran which is really good stuff. 

She wanted Chinese food to eat before she was released. (She did not want that last hospital food meal.) Shrimp and chinese veggies was the order. So, Mama and I went over to James Island to get  while the chemo finished up. It took us about an hour what with walking down to the parking garage, getting to a bank machine, ordering and waiting for the food, and Mama and me getting our food from Sonic. Anyway, when we walked in with the food, she opened it, took one bite, and decided that she couldn't eat it, and wanted  take it home to eat.  (The smell overwhelmed her.) 

She was released about 15 minutes later and we took off for Sumter, hoping to get across the Lake Marion Bridge before the temperature fell below freezing again. Well, after about 25 miles, miles Missy,  wanted to go to the bathroom. There are no places to stop for one stretch there on I - 26. Between I-26 and I-95, after Summerville, there is one exit with a bathroom. So, she had to hold it until we got there. 

We finally pulled off at Harleyville. Not a wonderful pit stop, with a bar called the Finishing Mill connected to the Shell Station. But that was the only choice. So, she went to the bathroom. We still can't figure out why there is a bed in the bathroom there. We decided that we just won't let our minds go there. 

When she got back into into the Jeep, Missy told me that the Chinese food smell was starting to get to her even though I had wrapped it up tight in a plastic bag So I put it in a Patient Belongings bag and tied it to the luggage rack of my Jeep Cherokee. I tied it really well. I even used some of the extra stretchy stuff that they gave us for Missy's arm to hold the catheter lumens, to keep them from dangling. It looks like while fishnet stocking. That was actually the first time that I have ever used the luggage rack. Picture this small, package on the top of the Jeep. White Chinese food bag, inside of white plastic sack, inside of clear, patient belongings bag, tied to the roof with white stretchy stuff and the strings from the patient belongings bag.

It was 32 degrees outside, colder than a fridge, so I figured that the food would be fine. When I got back in the Jeep from tying on the Chinese, I said to Missy and Mama, "Wonder how many people will wave at us, telling us something is on top of the car before we get out of the parking lot?"

Before we could get out of the parking, 3 people tried to wave us down. We just giggled and giggled. It was funny. With the first, I just nodded and smiled through the window, pointed to the roof like he was and  said, "I know" and he figured it out. Then with the next two, I told Mama and Missy to just smile and wave real big. We just kept on giggling. I told them as we drove off that they should have rolled the windows down and hollered out, "Ya'll folks sure are friendly here in Harleyville." Today, we fed the stuff to the Dalmatian. The food had soaked through the paper carton because I had left it tied to top of the Jeep all night. Missy didn't get to eat it, but we had more than $5 in laughs off of that little order of chinese food.

January 25, 2004 ESHAP day 3

Dr. Stuart is still pleased with Missy's arm. Looks great. She asked him how long these setbacks have delayed the transplant. He said about 4 weeks.

He said that she will probably get to come home late Tuesday or on Wednesday. Missy is ready to come home.

Mostly Missy just wants to sleep. She keeps the lights out and the TV low if she has any sound at all. Dr. Stuart says that it is easier to deal with nausea if there aren't bright lights and it's quiet.

Missy ate some of her hospital lunch today. Her only favored meal here: fried chicken, rice with tomatoes and okra to pour over the top, and congealed salad. (I mean favored. It's sort of hard to have a favorite when you don't care for any of the food except for that one meal. The menu is the same week after week.)

I ordered her a baked potato for supper.

The weather started looking bad, ice and rain, so we decided to head on back to Sumter about 2:00. Missy's nurse today and tomorrow is Sarah. She is always so good to Missy, anticipating what she needs before she asked for it. Sarah is great.

Dr. Stuart is very pleased with how the wound from where the PICC line was removed from Missy's left arm looks. He said that it is healing up very well.

Missy has some pain in her side, on the left. Dr. Stuart thinks that it is from the pneumonia drying up.

Missy ate a very good super tonight. Bruce and I want and picked up some chicken for her, with mashed potatoes, and cole slaw from Church's. Before we went there, we had checked out the seafood restaurant where the She Crab soup came from, but it was busy, busy, busy. Plus the traffic on James Island was awful. We picked up a 1/2 gallon jug of sweet tea for Missy and some banana pudding. Earlier today, we had gone out and gotten some Atlanta Bread Company loaf of soup for her lunch and picked up some more canned teas and small cartons of Tropicana orange juice for the nurses to keep in the fridge for her. The oj and tea here leave much to be desired. She is pretty sick of hospital food too.

Bruce and I checked into the nearby Comfort Inn. You know, sometimes, we complain about how far it is to Charleston. If it wasn't so far (about 100 miles) we could be with Missy everyday. Well, we should just quit our fussing. A girl about Missy's age is in the room across the hall. She is from Bulgaria and is here for treatment. Look at how far she had to come. Her family is here and I'm sure that they have had to rent a place. Looks like a father, mother, brother, and maybe an aunt. She is a 5th year law student. She still has her hair, very long hair, so I wonder if she has had any treatments at all. Maybe she is relapsed. Probably leukemia. Missy seems to be the only Hodgkin's patient in the unit. (I read the big board with room numbers, names, and who is the nurse, and whether they are oncology or hematology. They list Hodgkin's as oncology, even though it really is hematology.)

January 23, 2004 ESHAP day 1 of 5

The new PICC catheter is in Missy's right arm in the same spot the one in her left arm was. They started the cycle of ESHAP chemo treatments today. It will take 5 in hospital days. Today is Missy's Uncle Timmie's birthday. His present is at home in the closet. 

Missy had some She Crab soup from a restaurant on James Island for supper tonight. Her dad brought it too her. She said that it was very, very good.

Etoposide ( e-toe-POE-side) belongs to the group of medicines known as antineoplastic agents. Etoposide often causes nausea, vomiting, and loss of appetite, which may be severe. It also causes tiredness and weakness.

Solu-Medrol is a steriod. Possible side effects are depression, headache, hypertension, edema, and mood swings. It causes facial "mooning" (also known as "chipmunk cheeks"). It's good for decreasing inflamation and relieving pain.

Ara-C is also know as Cytosine, Arabinoside,  or Cytarabine. Ara-C interferes with the multiplication of cancer cells and slows or stops their growth and spread in the body. Ara-C usually does not cause nausea or vomiting. It does cause decreased blood counts (Bone Marrow Depression): Bone marrow produces blood cells. Ara-C can lower the number of white blood cells which guard against infections and platelets which prevent bleeding. Ara-C can cause sores in the mouth (stomatitis): Patients experience this in varying degrees with some having fever-blister like sores. 

Cisplatin can cause nausea and vomiting. Plenty of fluids will be given with cisplatin to protect the kidneys. Ringing in the ears may be experienced. Temporary taste alteration may occurr.

January 22, 2004

Missy will be in the hospital longer than they said on Monday. She has had another set back. The PICC catheter that was placed in her arm on Friday for chemo has become infected. They took it out this morning  (in the room). They will be putting in another one later today (in a different spot). They were to start the chemo yesterday, but didn't due to the catheter. I didn't find out until about 6:30 P.M. yesterday.

Her father is with her, staying until I go back for the weekend.

She won't be getting out on Monday as planned. We don't know how long this will extend her stay and delay the transplant.

"Love the moment. Flowers grow out of dark moments. Therefore, each moment is vital. It affects the whole. Life is a succession of such moments and to live each, is to succeed." Corita Kent

January 21, 2004

They did another bronchoscopy on Missy yesterday. She was really upset about it because they had promised that if her fever did not spike again over the weekend that they would not do it. It didn't but her main doctor changed his mind. (The attending had told her that they wouldn't do it and had to come back and tell her that they would do it after all. He had scheduled it for Monday, just in case, came in told her they wouldn't do it, to eat breakfast, then came back at 12:00 noon and said that they would do it Tuesday.) 

Anyway, the bronch looked good, no closed airways, no visible signs of infection. They took some washes to see if they can determine what caused the pneumonia, but admitted that since she has been on 3 antibiotics for a week that nothing may show up at all. She was so upset because she came to during the last bronch and they had to hold her down. Didn't happen this time. They were aware of the last time. I kept telling all who would listen.  Also, they used a different pulmonary doctor. Plus, Missy's aunt has a friend that works back there and he made everyone aware of the Missy is hard to put under with twilight sleep deal. 

They gave her a happy pill before the procedure, and she was ok with it.

So, she will stay there for a chemo that if she hadn't gotten the pneumonia, she would not have had to have. She would have been having the transplant chemo and the transplant by now. Because she has not had  a chemo in 3 weeks, they have to do one and it needs to be an in hospital one due to just getting over being so sick. She probably will not get out until Monday. Longest stay yet, 2 weeks plus in a hospital.

They need her to get her strength back up to be ready for the high dose and transplant, so it will be on over in February now we think. They have to wait and see. They just say things like get this chemo done, get her counts back up from that, get her back on track for the transplant........

January 19, 2004 

This morning, about 9:30, Dr. Brescia, Dr. Smith, and the entourage of medical students (about 10 people in all) came into Missy's room. Dr. Brescia said that since she was doing so well, that the bronchoscopy wouldn't be done and that they would start the ESHAP chemo today. They asked if she had ever had a Procrit shot. (She has had one.) They plan to give her some Procrit shots. Her white count is 2.9, but Dr. Brescia says that her nuetrophil levels are good, so her white count is within acceptable range.

At noon, Dr. Brescia and Dr. Smith came back. The plan had changed. Dr. Stuart decided that he wants the brochoscopy done after all. It will be done tomorrow morning. They had promised Missy that if her fever didn't spike over the weekend and if her breathing was enough better, they wouldn't order the brochoscopy. She is upset. Dr. Brescia explained that Dr. Stuart is concerned because she has had repeated bouts of pneumonia and wants pulmonary to see if they can see what is causing it, maybe even to put in a stint to open up an airway if needed. Dr. Brescia promised that the waking up during the procedure like the last brochoscopy would not happen again. He says that everyone is aware of that experience. He said that having the Hickman catheter will make the difference. The medicine for the procedure will go directly into the catheter. Before, it infiltrated, and she came up out of it during the procedure and fought because she felt that she was drowning. (The were squirting water down in her lung to get washes.)

I called Lynn, the school secretary to let her know that I am staying another day to be here with Missy for the bronchoscopy. Dr. Smith and Brescia feel that I will be able to get home to Sumter in time to teach the grad class tomorrow night at 4:00. (I will need to leave by 1:30 or 2:00 at the latest.)

Missy got dressed and walked down to the cafeteria area with me.  On the way she saw the view from the 8th floor waiting room for the first time. She ordered a hot dog and curly fries from the Hotdog factory. They really piled the chili, relish, and slaw on her dog. Then we came back upstairs so that she could eat. After her hot dog, she took a bath, while Carmen changed her bed. Then she napped for a few hours, while I graded papers, recording the grades on the gradebook on my laptop. (I've got 2 classes done. Seems like I'd get more done, but there is a lot going on. I make trips to the parking garage to get things out of the Jeep. Missy sent me for M and Ms after she woke up from her nap.)

"God has put something noble and good into every heart his hand has created. So while living on earth we must always remember to learn from yesterday, live for today, and hope for tomorrow because time will only show what has mattered throughout our journey." --Melanie Klein 

January 18, 2004

Missy had a pretty restful night, except for the interruptions from them starting antibiotics, checking on her, etc. She did have some nausea at one point because the nurse didn't put the nausea medication in the IV before giving her the antibiotics. (The day nurse made sure to do that, and Missy didn't have nausea then. We'll have to make sure that the night nurse puts the nausea meds in before staring the antibiotics. When the night nurse came back once I called her about the nausea, she said that those antibiotic can cause nausea on an empty stomach.)

The resident checked on Missy about 7:00. We didn't realize that the sun was up because this west side of the building corner room is dark in the mornings and it was raining this morning.

Dr. Brescia came in about 8:30. He is still pleased with how she is doing. He checked to make sure that what he coughs up has no blood. (It doesn't.) He said that a cycle of ESHAP takes 4 days and that if they get to start it on Monday, that the soonest that she would get out of the hospital would be Friday.

I slept on the recliner in Missy's room again last night. The folks from Friday had told me that I could take a shower in Missy's bathroom, so I did last night, put on flannel PJs and was much more comfy than sleeping in my clothes.

Mama and Chase (Missy's cousin) came to visit today. Mama stayed with Missy while Chase and I went out to get Missy some canned tea. Just before we were going to leave, the C.A. Carmen, happened to be in the room when we were talking about Missy's pjs needing to be washed. I thought that I would have to find a laundry mat, but Carmen told me about a washer and dryer that we could use. It's over in the children's' section of the hospital, on the 7th floor. After we came back from getting the tea, Chase and I took Missy's things over and I put them in the washer. Thank goodness that I have learned my way around this place. This medical complex is huge. Back in October, I would never have been able to find my way, but having been here so many times now, I knew what Carmen was talking about when she said the elevators past the aquariums. We have to go that way if we go back and forth to where Missy's doctor's office is in the Rutledge Tower.

I went into the gift shop today. I got Missy a Medical University of South Carolina T-shirt and a GET WELL SOON balloon with a beach chair facing the ocean. 

Missy napped during the afternoon. The nausea medicine that they are giving her with the antibiotics makes her drowsy. I called another Hodgkin's patient's mother. They live in West Virginia. She had sent me her number when she found out that Missy was in the hospital sick. We had a long talk. (Thank goodness for free long distance on my cell phone on the weekends.) It felt good to talk with someone who knows the "lingo" without having to explain it. Also, she feels like I do about hearing that Hodgkin's is somehow a "good" cancer, because it's so curable. Folks don't know how bad the treatments are. The chemo, radiation, and now for Missy, more chemo and next  a stem cell transplant. Some cancers can be cut out or they are treated with much less chemo. Everybody needs to read Lance Armstrong's book. (Thanks, Nancy. We read it and need to return it to you.) What he had is treated sort of like Hodgkin's. He had some of the same chemos that Missy has had or will have. 

Missy's fever has stayed down, so they will probably start the ESHAP chemo tomorrow.

January 17, 2004

I slept on the recliner in Missy's room last night. She had a pretty restful night. She woke up short of breath once during the night, and got a bit scared, but by the time the nurse got the resident to check on her, she was relaxed again and fine. They are giving her Rocephin (antibiotic) alternating with the Clindomycin. The PICC line is working fine. She had a 100 degree temperature this morning, but the medical folks weren't concerned. Dr. Brescia came by a little before 9:00 this morning. He said that they are pleased with how she is doing now that the pneumonia is so much improved. They do not plan to get pulmonary involved unless her fever spikes again and her breathing worsens. He is pleased with how her lung sounds. They really don't want to do a pulmonary procedure if they don't have to because of her blood clotting issue. The plan is still to see how she does over the weekend and then see about giving her the ESHAP chemo the first of the week. Her white count is 2.8 (2,800). It was 6 (6,000) when she first checked into the hospital. Dr. Brescia says that he is not sure why it dropped like that but it is possible that with all of the chemo treatments that she has had, her marrow is  not working quite as well. He asked her if he had been out of the room. Missy joked and said, "Only to the mall last night." Dr. Brescia noted that she had eaten her breakfast and said that was a good sign. (She had me order Corn Pops with milk, hot tea, and fruit for her. She had the Tropicana juice than her Uncle Stan had brought. She doesn't care for the oj that comes with the hospital food.) At 9:30, her temperature was at 99.6.

Missy had chicken noodle soup for lunch. For supper she wanted some Atlanta Bread Company, Loaf of Soup. There were some other things that she wanted from the store, so I headed out about 3:30 to pick some things up. I went to the Harris Teeter on East Bay Street. I had to sign up for a Harris Teeter VIC card to get stuff on sale. I haven't shopped at a Harris Teeter since the one at Litchfield Beach changed into a Bilo so my phone number wouldn't work anymore.  I got some more Tropicana oj, in cartons this time and a few other things. Traffic was very bad on Market Street and I couldn't find any place to park in order to get into the Atlanta Bread Company. The only thing that I could figure to do was go back and park at Harris Teeter and walk up East Bay to Market Street to get the soup. So, that is what I did. It gave me some exercise. I had my Harris Teeter receipt in my pocket and $35 of grocery items in the Jeep, in case anyone got upset about me parking there and walking 4 blocks away and back. (Parking is at a great premium in Charleston due to the tourism and there are signs at the grocery store about parking being for customers only.)

When I got back with the loaf of soup, Missy was snoozing. The nausea meds make her sleepy. I took my paperback and went down to the waiting room to let her nap. When I returned to her room, her super tray had come. I got the nurse to warm the soup up, it was lukewarm by then, not hot. I ate her supper tray and she had the loaf of soup. She had Southwestern chicken soup and said that it was pretty good. Both the nurse and the C.A. wanted to know where it had come from and said that they had never been to the Atlanta Bread Company and should try it out. Minerva, the C.A. wanted to know if I had picked up any extra menus. I had two, so Missy gave her one. Minerva said that this would be a new place for them to order from.

A PICC line with 2 lumens was installed in Missy's right arm today. It's on the inside of her arm,  just above her elbow. 
The twilight sleep, or whatever it was, worked this time. She said that it was not a bad experience. She was down in inerventional radiology a couple of hours, getting back to her room about 5:30 P.M., just in time for supper, but she didn't want the hospital food. The nurse checked the catheter right after they got her settled. She was able to get some blood flow out of it. She said that they would wait about 1/2 an hour before they actually use it. After about 30 minutes, the nurse was able to hook up the antibiotics (Clyndomycin) and saline to the PICT line.  (This meant that they were able to remove the two IV lines from her hand and arm.) They gave her something for nausea too, because the antibiotics have been making her queasy. They are also giving her Tequin by mouth. The is back on Lovenox injections, which they let her give to herself. She is getting Tylenol and pain medications. (She doesn't want the pain meds, afraid that it will be hard to stop taking them.) Her cough is much, much better. They are giving her a cough medication when they bring in the other pills. She has not spiked a fever today. She is also using a bit of oxygen, if she feels short of breath. The plan is to watch her through the weekend and if she doesn't spike a fever again, to do start a cycle of ESHAP chemo on Monday. This is a different pre transplant chemo regimen from the ICE that she has had 2 cycles of. She wouldn't have had to have another in hospital chemo like this if the pneumonia hadn't put things behind.

Missy wanted Church's Fried Chicken for her supper. The C.A. told me that the one on Meeting Street is the nearest. (We had been to the one over on James Island before.) I had a sort of adventure at the Church's. After I had ordered, paid, and was waiting for Missy's food, a middle aged man started yelling at a younger man about breaking in line. I didn't notice anyone breaking in line. The younger man just sort of ignored the other man, but the man kept yelling. He wanted to fight. Goodness, it felt like a fight about to happen in my classroom, and I needed to buzz for Dr. Coon. I almost felt the urge to say, "Now lets get along. You go over there, and you go over on the other side of the room and everyone calm down." That's what I always do at school if kids act like they want to fight in my room. Sometimes it works, sometimes not. Anyway, this elderly man got up from eating and got between them. He said stuff like, "Everyone just calm down. No one wants to fight. Everyone just wants to eat chicken." Well, somehow mentioning the chicken set the loud one off again. He started hollering again. So, the manager distracted him asking him what did he want to eat and asking him to please settle down. They got his food right away and got him out of there. Going out the door he was still hollering at that young man, who to his credit, never said a word, just looked stunned at the ruckus. I don't think that I will go to that Church's again. I'll go to James Island.

When I called Missy's room this morning during my planning period, Missy's Aunt Kim answered the phone. She said that Missy's color was much better.  Luckily Kim was with Missy when rounds were made. (She works in research at MUSC and is able to pop over to Missy's room at times.) Dr Brescia is the attending physician this month. ) The illness appears to be some sort of pneumonia.

Dr. Brescia is pleased with Missy's progress and talked with her about the possibility of  having a pulmonary procedure done to help open her airways and maybe putting in a drain tube. (This must be why they aren't giving her any more coumadin right now.)  He wasn't sure today if that is what he wants to do because of her positive response thus far to the antibiotic treatments but is going to set things up for the pulmonary procedure, just in case.  Kim said that she reminded him about Missy's horrible experience  with a previous  pulmonary procedure and she asked if additional measures could be taken to insure that waking up during a procedure would not happen again.  He assured her that additional steps would be taken.  She also asked him that her friend, Dr. Brad Kilpatrick, (pulmonology) be consulted.  She will see Brad tonight at Scout meeting when she takes her boys, Missy's cousins, and  will let him know about the possibility of Missy coming into pulmonary for a procedure and see if he can make sure that things are different.

Dr Brescia also mentioned doing another chemo treatment while Missy is hospitalized if things look good enough. They also discussed putting in a new port for chemo.  Kim said that she reminded him of Missy's  clotting issues with the last port  and he said that due to the toxicity of the chemo that she would need a port. (This would be another reason for no Coumadin at this point.) Dr. Stuart had let us know on December 30th that she would have to have a port for the high dose chemo. It just cannot be put in via a regular vein. He assured us that the line for this next port would smaller than the one they put in for the stem cell collection. This means that it would not be as likely to irritate and cause a clotting problem.

I had called the nurse's station this morning at 6:30, before leaving for work, but wasn't able to talk with the nurse. He was with a patient and I imagine that he didn't get to call me back, because the nursing shift changed, and I went to work. I left my cell number, but had to turn it off once the bell for the students to come into the building sounded.

Mama called the nurse's station later in the morning and ended up speaking to someone on the 1st shift, but we think that she was giving Mama old info, telling her about the fever having gone to over 102 degrees, etc. She probably didn't realize that Mama had been checking on Missy all along. She also told Mama about the possibility of a pulmonary procedure. 

January 14, 2004

I spoke with the nurse, Julie, again this morning at 6:30. (They work 12 1/2 hour shifts.) She said that Missy had slept through the night and was sleeping soundly at the moment. She thought that it would be a good idea for me to call her about 9 or so, during my planning time. I called and Missy said that the food isn't so great. (Complaining about the food is a good sign. She must want to eat.)

I called again at 9:00 P.M. and spoke with the 2nd shift nurse, Jason. He said that Missy was in pretty good spirits. He had never taken care of her before and said that he didn't know her very well, but she seemed in good spirits. They are treating her with antibiotics, fluids, and she had some blood. They have taken her off the coumadin for now.

January 13, 2004

Whenever I call Missy, I always seem to wake her up, so I decided to start calling the nurse's station to get them to check to see if she is asleep or not. I spoke with Missy's nurse, Julie about 9:00 P.M. She said that they had added Rocephin to the other two antibiotics that Missy is getting and that she seemed to be responding. That's the same one that Tuomey Emergency gave her on Sunday. She said that they had been able to get the fever down and that she was up in a chair and eating soup right then. Julie told me that she would go down to Missy's room to make sure that she could reach the phone, to call back in a few minutes, ringing Missy's  room. I did and spoke with Missy. She sounded tired, but seemed in pretty good sprits. They gave her some blood today. That should help with her counts.

January 12, 2004

When I checked Missy's temperature this morning, it was 101.5. Right away, I called Charleston. First, I talked to Jill, one of the nurses, and she told me to call the paging operator and ask for the hematology fellow on call. Dr. Jamey Smith called me back about 7:00, asked me about her condition, about the emergency room visit, etc. He said that she would need to be admitted to the MUSC hospital and that he would call back after talking to Dr. Stuart. I had to get to school, but Bruce stayed and took care of things. My mother came over to get Missy packed. By 10:30, the arrangements for admission had been made, so Bruce left to take Missy to Charleston. She was admitted by 12:40 and once again on 8 West. By 1:25, they were taking her down for a nasal CT scan. They did say that it appeared to be a sinus infection. They have her on IV antibiotics.

Missy is very disappointed. Tomorrow was to have been hopefully, her last clinic visit before the high dose treatment and transplant. Now that is delayed.

We made a trip to the local emergency room this morning. Missy's temperature was 100.4 when we checked it. She said that her chest hurt and head was really hurting. She felt like she has a sinus infection. We got there about 10:00 and this time were taken straight back into the triage room. Thank goodness for someone with some sense at the check in desk. I was ready to tell them that if she had to wait, that we would go home to wait, for them to call when they were ready for us. (I was  not going to let Missy sit in some waiting room with a bunch of sick people.) When the checked Missy's temperature there, it was 100.5. We saw a different emergency room doctor. He ordered an x-ray and ordered IV antibiotics. It was Rocephin this time. He didn't order any fluids. They gave her some Tylenol and a shot for pain and said to call her Charleston doctor tomorrow. I had offered him the numbers to call, but he didn't feel that he needed to talk with them. He said that the x-ray didn't look any different from October or December, and he couldn't see any pneumonia, so he couldn't tell what was wrong. Missy rested the rest of the day, coming down to have some soup for supper. 

"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 Robin, 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.

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.

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. Do not pray for tasks equal to your powers. Pray for powers equal to your tasks. -Phillips Brooks

December 16, 2003 Taking the Hickman Catheter Out Day

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 that.
At 11:45, Ashley suggested that I go and eat, because it might be a while. We found out from Ashley that lovenox breaks up blood clots. Coumadin is a well known blood thinner, which helps prevent clots.

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? I was practicing for this, I was training for this. - Epictetus

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. 

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:
1. plasma
2. red cells
3. white cells (where the stem cells are)
4. platelets

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.

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.

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.

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