Sou Updates

Tuesday, February 3

2009-02-04T08:28:00.000-08:00

<-- The Sunrise

At 15 minutes before 8am, the surgeons came for Sou's dressing change. Sou already had his fentanyl lollipop in his mouth. They wanted to try this in combination with the oxycodone for his pain. He made the regular moans but in the end he said it was alright. After the procedure, the nurse disposed of the lollipop and gave Sou his morning medications along with his chemo pills. Before Sou took his nap, he asked if I could go to my mom's place to make some spaghetti. He was craving non-hospital food and missed my cooking. I called up my mom and told her to pick me up. I figured I could also make Kaliya some cupcakes too. She's been begging me to make her cupcakes.

When 10am came around, the new md fellow came by. He replaced the previous fellow, Dr. Khera. He wanted to talk to Sou about taking some bone marrow. This would be the actual test to determine if we could go home soon or not. They were going to check if Sou had any remaining leukemia cells in the bone marrow. If so, he would need to go through an additional week of chemotherapy. The doctor agreed with Sou to do the bone marrow at 8am tomorrow morning just after the dressing change. All Sou was concerned about was the pain. He clearly remembers the events of the last bone marrow he did. The doc said that he wasn't taking a bone biopsy, just aspirating the marrow. He also said he would give Sou more pain meds than the doctor in Anchorage. About five minutes after he left the room, he returned with the group of docs. The leader thought Sou was ready to be released from the hospital and said it was alright for him to be released tomorrow. FINALLY. YAAAAY!!! They would make sure I had all the necessary supplies to perform the dressing changes. We asked about when we could go back to Alaska and he said it would depend on the results of the marrow and what the surgeons thought regarding his wound. He mentioned that they could probably remove the rubber drains from the wound in about a week.

After the docs left, my mom picked me up to make spaghetti for Sou. We stopped at Safeway for the ingredients and went to her place. While she made the spaghetti I made cupcakes for Kaliya. I baked french vanilla cupcakes with whipped cream frosting. I packed up some of the spaghetti for Sou and waited for Kaliya to come home from school. When I heard her coming in the door, I hid in the shower.

"AAAAHH CUPCAKES!!!" I heard her yell. "Aww, I wish Jheri could be here," she added.

"She was here, but she left already," my mom told her.

"She was??? Haaww," she whined. My mom told her to wash her hands before she could have a cupcake. She came into the bathroom. I waited til I heard her shut off the water.

"BOOOOO!!!!!!" I shouted as I threw the shower curtain open.

"AAAH" she screamed. "JHERI!!" I gave her a big hug and told her that I needed to go back to the hospital. She asked if she could come with my mom to drop me. Before we left the apartment, Kaliya scarfed down a cupcake leaving frosting all over her face.

When we arrived at the hospital, I layed out the tupper ware with Sou's spaghetti. I also brought a loaf of french bread for him. He prefers soft french bread over garlic bread. He ate everything like he was Cookie Monster. When he was just about done, he said, "Oooh my stomach hurt." He ran into the bathroom. When he came out, he washed his hands and finished his meal with a cupcake. His appetite was definitely coming back.

His nurse came in and gave him his pain medication so he could get a dressing change. Before leaving the room, the nurse said, "Okay, you're comfortable with the dressing changes?." I told her I was.

"Okay, so call me if you want me to be here when you do it. Or call me if you have any questions," she said.

"Sure, thanks, " I said. While waiting for the medication to take effect, Sou took a shower. As he did this, I got all the supplies ready. Sou hopped onto the bed and got comfortable. I turned on the super bright lights so I could see. I threw on some gloves and pulled out the dressing. I noticed less gauze came out. I peeked inside the cavity and saw that the wound was getting shallower and more narrow. I didn't see any gauze left over so I pulled out the gauze from the other side. I threw the bloody gauze into the biohazard bin and pulled on a new pair of gloves. I wet the gauze roll with normal saline and grabbed a sterile cotton tipped applicator (large q-tip). I held the gauze in one hand and the applicator in the other. As I pushed the gauze into the back of Sou's wound, I unraveled the gauze roll little by little until the wound was completely packed with gauze. I tossed the applicator into the nearby trash and reached for the scissors. I cut the piece of gauze and repeated the process in the second wound. This one was really shallow and healed a lot. You could probably fit one of those bouncy balls in there. The kind you get from those vending machines for a quarter at the front of the stores. In no time, it was all over. I put an abdominal pad over the wound and called it good. Like usual, Sou was asleep again within 5 minutes.

Later on, I ordered chicken wings and we watched two movies. It was 2am and I was sleepy. Sou stayed up all night in anticipation of tomorrow's bone marrow results.

SPAGHETTI!!!
CupCakes for Kaliya

Kaliya eating a cupcake

Monday, February 2

2009-02-03T09:12:00.000-08:00

The yummy-yummy lunch -->

This morning, when the surgeon did Sou's dressing change, I forgot to ask them about the firmness in one of Sou's butt cheeks. Sou said one of his butt cheeks was "harder" than the other. He also complained of some pain too. I was so tired, it slipped my mind. The surgeon said the wound looked really good, just as always. She asked me if I would be comfortable doing his dressing changes out of the hospital. I told her yes. She said she would contact the pain doctors to get a plan set up to get Sou off the fentanyl IV.

Later on, Jaime and Dr. Shustov stopped by. We asked about how soon Sou could be released. He said either Thursday or Friday they'll do the bone marrow biopsy again. If it came back negative for leukemia cells, we would be able to fly home. Thursday or Friday was when Sou would be done with his IV antibiotics and hopefully will have a pain plan for his wound. If everything could be done and over with by then, that would be fantabulous. If there was still leukemia cells in the marrow, Sou would need to continue treatment. I asked them if he would be able to return to work normally because when we were in Anchorage, Dr. Liu mentioned that it would be hard to work afterwards. But this was before we knew the exact sub-type of AML that Sou had. Jaime said that Sou has the most favorable sub-type and he should be able to pick up life where he left off. That was good news. I remembered to ask about the butt cheek. They threw on some gloves and pressed on the cheek here and there. Dr. Shustov said they would have the surgeons stop by today and look at it because they didn't want any "set backs". They left the room and off to sleep Sou went.

For lunch, Sou had fruit while I had some of the sushi from downstairs. I decided to try it because they always run out by the end of the day. It was alright. I may eat it again. I had the smoke salmon with cream cheese. Then one of the surgeons stopped by after lunch. He looked at Sou's "firm" butt cheek and said it was inflammation around the cavity of the wound. At around 4pm, Sou got some oxycodone instead of fentany and took a shower. The pain doctors decided to take Sou off the fentanyl to see how the dressing changes went. When he was done, he needed his dressing re-packed. They wanted me to give it a try. I've seen them do it a million times. I put on regular gloves and the nurse helped me get all the supplies together. She saw the regular gloves on my hands and said with her filipino accent, "Oh no honey, sterile, must be sterile glubs." I never saw any of the surgeons use sterile gloves before. But whatever. She also got a sterile cloth to put under Sou's butt. I slowly tugged on the piece of gauze in his wound. He began to whine and moan like usual. There was some resistance but I just pulled a little bit harder. There wasn't as much gauze in there like before. His wound was significantly smaller than before. After he got a "breather" I told Sou I was going to start packing in the gauze. Occasionally I would say, "Okay, deep breath in," as I pushed the gauze in. He made louder moans and the nurse put in an order for the fentanyl lollipops for tomorrow. In the end, Sou said it wasn't too bad.

For dinner, Sou was craving a chicken burger. I went downstairs to the Cafe Plaza and grabbed two chicken burgers, one with fries and one with onion rings. I also got Sou a coke. He wanted some ice cream so I grabbed two drumstick ice cream cones. It was interesting to see the people look at my tray as I walked back up to his room. Yea, like I was gonna eat two of everything! Sou inhaled the burger before I could get two bites in. It was relieving to see him eat more. In the past few days he felt like eating only fruit. After dinner, Sou took another nap while I went upstairs to the family room to take a shower and do a load of laundry. While upstairs I managed to get more reading done. My mom called and said she would pick me up to do a store run. We were low on shampoo and body wash. On the way back, we made a stop at McDonald's to get Sou a snack. I got him one of those cheeseburger mini-meals that was only $3. I had a bacon ranch salad. We ate the fast food while watching Defiance and Bolt (one of the movies Mark burnt us). After those two movies, Sou still felt like watching another. It was already midnight and I was tired. I put on Lost instead because it was in episodes. About 15 minutes into the first episode we shut it off and went to bed.

Sunday, February 1

2009-02-02T07:57:00.000-08:00

The gauze they pack in Sou's wound ---->

This morning I was half asleep during Sou's 7am dressing change. I went right back to sleep afterwards. I was so knocked out I sleep through the doctors' daily visit. Sou told me they said he would be able to leave the hospital next week. These things keep changing so I don't count on it. I woke up at around 10:30am and ordered some food. Sou didn't have too much of an appetite but I ordered him some fruit. I had their beef tenderloin with jasmine rice. It usually tastes good, but they forgot to give the salt and pepper packets. Sometime after lunch, Dad called. I gave him a quick update on how Sou was doing. Right after, a physical therapist came by to work with Sou. She made Sou do some leg exercises while standing up. Then, the three of us went for a walk in the hallways. Sou did a total of 4 laps around the floor. It was the most he walked since being in the hospital. When we came back to his room, we waited for the Super Bowl to start. I got some snacks and soda for Sou from the vending machine downstairs. After he ate his potato chips with coke, he fell asleep. I finished up a chapter in one of the textbooks and tried to read more in my anatomy & physiology book. I wasn't in the mood.

After 5pm, the nurse started Sou's series of fentanyl doses. Sou went to take a shower while I straightened up the room. When he was finished, the nurse did his dressing change. She explained to me the importance of keeping things sterile and not doing this and that. They mentioned that if they could get Sou's pain under control with a less strong medication, he could be released from the hospital. That means I would be doing his dressing changes. I'll do it. Pshh. It's not as deep as before so I have no problem.

After the Super Bowl was done, we watched The Office. It was this episode of dwight starting a fire and no one in the office knew what to do. Everyone freaked out and Stanley had a heart attack. Because of that, Michael Scott decided to have a CPR training course. Michael was not doing chest compressions at the required rate of 100 beats per minute so, the instructor told him to do it to the beat of "Staying Alive" by the Bee Gees. Everyone began to sing and dance (even Michael). The instructor broke up the dance and said that because Michael neglected the dummy and decided to dance, the victim died. She asked him, "What do you do next?" Dwight said to check his wallet to see if he was an organ donor. Dwight assumed the dummy was and took out a knife to harvest the organs from the CPR dummy. Then it went to a commercial. After The Office, we watched The Curious Case of Benjamin Button on the laptop. It seemed like a long movie. I was surprised because Sou didn't fall asleep like he normally does. We called it a night after the movie.

Saturday, January 31

2009-02-01T10:43:00.000-08:00

<-- Sou's Chicken Wings

As scheduled, Sou had his dressing change with the surgeons at 7am. This time, seemed like it went better than the last. Sou was moaning less. The pain seemed more tolerable compared to the first couple of dressing changes. He usually wants me by his side during the dressing changes so after it was done, I was able to go back to sleep.

At 9am, I was woken up by the group of docs that stopped by. Like usual, the leader, the 3rd-year resident, and Jenny were there. This time, they had a "new" newbie. It was this young, asian dude with glasses. And like the previous newbie, he stood there, didn't say a word, and just observed. The leader did most of the talking. He said Sou was on day 17 of 21 for his chemotherapy.

"At around day 23 or 24, we will check your marrow again to see if there's any leukemia cells," said Dr. Shustov. He also mentioned removing Sou's foley catheter and central line today. Today was going to be a busy day. Not only doing what Dr. Shustov said to do, but Sou was supposed to walk around the floor with physical therapy and take a shower. That didn't give us a lot of time because of how drugged the dressing changes left him. But to my surprise, Sou wasn't as sleepy. He didn't go back to bed after the docs had left. He just watched Ninja Turtles on the Cartoon Network. After a while, the nurse came in to remove Sou's catheter. It was more painful coming out than when they put it in. He was okay except for the lingering memories. He still complained about it a couple hours after.

Sou took his nap around lunchtime. The nurse woke him up around 1pm and said he should start walking around. There was significant swelling in Sou's legs. She brought Sou some "anti-embolism" stockings to help reduce the swelling. Shortly after, Jaime stopped by to remove Sou's central line. It's kinda like his PICC line, but in his neck. They were saying that because they weren't using the central line, they should removed it due to the risk of infection. She cut the stitches that held the line in place. After she had the dressing taken off and the stitches cut, she quickly pulled out the catheter that led to Sou's heart. It was the size of a 6-8 inch long spaghetti noodle. After applying pressure with some gauze, she taped the gauze to his neck. The next couple of hours consisted of more textbook reading and watching the movies that Mark burnt me.

Around 6pm, Sou took a shower and brushed his teeth. At the same time, I ordered chicken wings from Wing Zone. I picked up their brochure in the lobby area last week. Sou said he wanted plain wings so I ordered that for him. My mom was supposed to swing by and bring cheeseburgers from McDonald's after work. She said she was going to this casino afterwards but was making the time to bring food. It was out of her way and there would be traffic so, I called her to tell her that we already ordered food. She insisted on bringing the cheeseburgers anyways. After his shower, the nurse also changed his dressing around the PICC line. The smell from the alcohol pads really bothered him. He had the blanket over his nose the entire time. One of the nurses told me that chemo can heighten your senses. A couple weeks ago Sou was having issues with the smell of his urine and had to use a face mask every time he used the bathroom. They decided that because the dressing from the abscess would get wet in the shower, they would also do that dressing change right after. Sou got his doses of fentanyl and his wound packed. The nurse made comments on how well his wound was healing. Sou said each dressing change was becoming more and more painless. After that, Sou didn't feel like eating yet and took another nap. I watched another movie from Mark.

Around 10pm, they gave Sou his chemo through IV. While his PICC line was getting flushed, Sou covered his nose with a blanket again. It was getting late and I figured that this would be a good time to take a shower. I prefer to take my showers when no one is in the family room. When there's a crowd in there, usually someone needs to use the bathroom while i'm taking the shower. I can hear them try to open the locked door and walk away. So, they end up waiting until i'm done. For some reason, they all think that bathroom is the only one in the hospital. There's a toilet down the hall and another one on the floor below us right by the stairs. But they always prefer to wait til i'm finished. So in the end, I feel rushed. Sou finally was hungry. He asked the nurse if she could microwave a cheeseburger for him.

"I would rather have you not eat those because of how long it's been sitting," she told him. She also meant the same for the chicken wings. I know this disappointed Sou. But she was right. If a cheeseburger had been sitting at home for a couple hours, we would usually eat it. She, in turn, offered some frozen lasagna that she could microwave. It was a veggie lasagna. I know Sou would never eat that in the real world, but that was his only choice for dinner.

Friday, January 30

2009-01-31T00:36:00.000-08:00

This morning, they gave Sou's medication before doing the dressing change. It went really well. His pain was less than the previous packing. This time, two surgeons were here to do the packing. They both agreed that his wound looked a lot smaller and was healing really well. Just like last time, Sou fell asleep afterwards. Around 11am, the group of docs stopped by. Jaime wasn't there because it was probably her day off. The leader said that he thought Sou was making great progress and that his main reason for being in the hospital is his wound. Sou didn't need to be in there for his chemo. Dr. Shustov, the leader, said he could do chemo as an outpatient. But because of the high doses of fentanyl for Sou's pain, there was no way they were releasing him.

"I would say, at least four or five more days you would be here," he told Sou.

I got a chance to sneak out of the hospital for a few hours. My mom took me to Bellevue to pick up her paycheck. We went to Alaska USA at a Fred Meyer's and they said the check needed to be put on hold. The teller said that nowadays, with the economy, any check can have a hold put on it. My mom was pissed off and we ended up going to a Wells Fargo. I told her she should move back to Alaska. Thousands of people were loosing their jobs in the Seattle area and that didn't seem to be the case in Anchorage. The gas prices in Alaska seemed ridiculous but I haven't heard anything about job shortages. We continued on to a California Pizza Kitchen. The food was pretty good. It had that "fresh ingredients" taste to it. It was too bad they didn't have one in Alaska because it seems like every time something new opens, the whole Anchorage flocks to its doors (e.g. Target and DQ).

I was dropped off at the hospital after. I managed to save some pizza and pasta for Sou. I walked into his room and he was awake. He ate a slice of the garlic chicken pizza but turned down the tequila chicken pasta. It wasn't long until he fell asleep again. I figured that would be a great time to read more of my textbooks. I ended up falling asleep too while reading. I woke up around 6pm when the nurse came in with Sou's medications. Like always, I poured him a cup of water so he could swallow the ginormous pills. It was the acyclovir that seemed to be huge. A nurse told me last week that they make bigger pills than that. It makes me wonder why they don't just make a smaller-sized pill and have the dose be two or three pills. Sou took another nap after that. At 10pm, the nurse gave him his 4 doses of fentanyl before changing his dressing. Like the other nurses, she took a little bit longer packing the wound than the surgeons did. She did make sure to clean around the wound and made sure the things that needed to be sterile, remained sterile. Sou did the usual moaning, but not as loud. He said it was a little less painless than the previous dressing changes. Sometime during the procedure, the nurse needed me to hold his buttcheeks. While doing so, I noticed that the wound did look a lot smaller. Yaaay! It's healing! Not a whole lot went on that night. He received his regular antibiotics and chemo via IV. He also swallowed more pills. They took away his morphine button while I was gone and said they wanted him to try and make do with oxycodone. Later on I went online to check the claims for Sou's health insurance. Thank God he had insurance. He had a million labs that were already submitted to Aetna. Every single doctor that came and talked to Sou at Providence ER billed at least $400. The anesthesia from his first surgery was $1,700. He only gets to pay 20% of everything. But his maximum out-of-pocket is $2,000. He'll definitely meet that once this is all over. I still didn't see a charge for the flight down from Anchorage. One of the ambulance bills was around $550. A couple months ago, the thought of bills reaching that amount would have made my jaw drop. But as your perspective on life changes, those bills are nothing. A price tag cannot be put on someone's life.

The Leader

2009-01-31T00:03:00.000-08:00

"The Leader"

Dr. Andrei Shustov is an assistant professor at the University of Washington School of Medicine and an Assistant Member of Fred Hutchinson Cancer Research Center. He cares for his patients at Seattle Cancer Care Alliance and specializes in hematologic malignancies, such as non-Hodgkin and Hodgkin lymphomas, multiple myeloma, acute and chronic leukemias. He is especially interested in systemic T-cell lymphomas, Cutaneous T-cell lymphomas and Castleman’s Disease.

As a physician, his goal is to provide state-of-the-art patient care based on current advancements in clinical research and participation in well-designed clinical trials. “I believe every patient is different, and I try to find a unique individual approach to the patient and his disease within the boundaries of current standards of care and recent discoveries of clinical science,” he says.

He received his medical degree from the Crimea Medical Institute in Ukraine in 1993. He then moved to Maryland at the urging of a friend and fellow physician to perform research on graft-versus-host disease. After six years, he realized he missed patient care and took the medical boards and went to York Hospital in York, Penn. in 2003 for an Internal Medicine residency where he became interested in oncology. “And I liked working with the uniqueness of oncology patients and their families,” he says.

He graduated from a Hematology/Medical Oncology Fellowship Program at the University of Washington and Fred Hutchinson Cancer Research Center in 2006. He now works alongside his mentors, Dr. David Maloney and Dr. Oliver Press treating and looking for new therapies for high-grade lymphomas.

When he isn’t working, he is a “fanatic traveler” who prefers civilization-free vacations in the depths of the South American jungles where he can practice his other passion, wildlife photography.
He specializes in hematologic malignancies, such as non-Hodgkin's and Hodgkin's lymphomas, multiple myeloma, and acute and chronic leukemias. He is especially interested in systemic T-cell lymphomas, Cutaneous T-cell lymphomas and Castleman’s Disease. Read more about him and his work at SCCA.

Title

UW Medicine; Hematologic Malignancies, Attending; Hematology Division, Assistant Professor

Patient Care Philosophy:

To provide state of the art patient care based on current advancements in clinical research and participation in well-designed clinical trials. “I believe every patient is different, and I try to find a unique individual approach to the patient and his disease within the boundaries of current standards of care and recent discoveries of clinical science”.

Cancer Types / Diagnosis:

Acute Lymphocytic Leukemia (ALL)
Aplastic Anemia
Blood Disorders
Hairy Cell Leukemia
Hodgkin's Lymphoma
Leukemia
Lymphoma
Multiple Myeloma
Myelodysplastic Syndrome (MDS)
Non-Hodgkin’s Lymphoma

Clinical Expertise:

Non-Hodgkin and Hodgkin Lymphomas, Multiple Myeloma, Acute and Chronic Leukemias. Special clinical and research interests: T-cell lymphomas and Chronic Lymphocytic Leukemia.

Education And Training:

MD: Crimea Medical Institute in Ukraine, 1993
Residency Internal Medicine: York Hospital, York, PA, 2003
Fellowship, Hematology/Medical Oncology Program: University of Washington and Fred Hutchinson Cancer Research Center, Seattle, WA, 2006

http://www.seattlecca.org/physician-detail.cfm?PhysicianID=79

http://www.seattlecca.org/physician-detail.cfm?PhysicianID=79&Story=1&DiseaseID=0&NetworkMemberID=0&UsePageID=0

Thursday, January 29

2009-01-30T07:55:00.001-08:00

Sou Getting an Echo

"Jheri, wake up," said Sou as the nurse shot his fentanyl down his PICC line. It was 15 minutes before 7am. The surgeon was on her way to change the packing in Sou's wound. I thought this time might be better being that the nurse was giving him his pain meds a little beforehand. When the group of people came into the room with the surgeon, I sat out of bed and stood next to Sou. The surgeon asked if Sou already received his medications. The nurse said yes. There were two guys who held up Sou's legs.

"Okay, big deep breath," said the surgeon. She began pulling out the gauze packed into Sou's wound. He yelled in pain. This went on a couple times more. One thing I liked about the surgeon was she was quick. When the nurses changed the dressings two days ago, they took their time. They weren't sure about this, uncertain about that. After all the gauze was out, they let Sou have a breather. The nurse also gave Sou more fentanyl. It turns out, she only gave Sou 75 beforehand. Two days ago, Sou had 300. Because it usually takes 10-15 minutes to take effect on Sou, it was pointless now. Then the surgeon began to pack in the fluff roll, damp with normal saline. His yelling continued for another 20 seconds. When she was done, they put some padding down to absorb the drainage. Before she left, she told us that the first week is the hardest and that it would take at least 4 weeks to heal. When the surgeon and her crowd left the room, the nurse checked Sou's vitals. His O2sat was 86%.

"Big deep breaths Sou," I told him. I saw it go to 94%. The nurse put on Sou's oxygen and Sou fell asleep. Now all the medications were kicking in. His nurse held off on checking his vital signs to let him sleep.

At 10a.m. they came to his room to do an echocardiogram. It's like an ultrasound of your heart. The procedure lasted almost an hour. She kept zooming in and looking at different spots. She turned up the volume on his heart beats. Sou began nodding his head like it was music. Occasionally you would hear a wierd noise that was inconsistent with the beats. She kept looking at one are for a while. After she was gone, Sou slept even more. A little after that Jaime, his regular doc, came in to listen to his lungs. She also let him sleep. She told me that they decided to skip a couple days of the chemo because they thought he might be having some side effects in his heart. Skipping a few days shouldn't bother his chemo treatment entirely. At 11:30a.m. a couple of pain doctors came in to talk to Sou about the dressing change that happened earlier. He said that there was no way to be entirely pain free. Their objective was to make the pain tolerable. They decided that because he's been getting 300 of fentanyl and still experiencing a great deal of pain, he adjusted the time schedule and amount he would be getting. He explained to his nurse that he wanted Sou to have 75 every five minutes, starting 20 minutes before the procedure (a total of 300).

"So, four 75's," he told her. I saw the nurse write down "475".

"No he means 75 times four," I told her. He looked at me and said, "Thank you." If the pain was still unbearable, he said that he could have two more doses of 75. The doc expressed that timing was key and the surgeons should not touch Sou until he's had his 4 doses of 75.

Sou went back to sleep until after 2pm. We watched some tv and I read my textbooks. A little bit before 6pm, they decided to start giving Sou his fentanyl. This time the nurse would do the dressing change. She said the surgeons will only show up in the morning. She gave Sou a dose of 75 every 5 minutes until she had given a total of 4 doses. Sou was more relaxed. I guess the surgeons didn't communicate to her about how deep Sou's wound was. She thought it was a couple of gauzes. She had Sou lie on his stomach and began to pull out the gauze. As more and more of the gauze came out, she began to see how deep his wound was.

"Ahh my gawsh! The surgeon did not tell me it was like that! I asked if I needed to use a q-tip. They said to use my fingers! I'm not gonna stick my finger all the way in there," she said. But she did stick her fingers into the wound. She was a lot gentler than the surgeon. I saw her lightly pack the wound. Sou was much more calmer this time around. I wasn't sure if it was because she didn't pack enough gauze in or because of the medication timing. Who knows. We'll find out when the surgeon returns tomorrow morning.

Wednesday, January 28

2009-01-29T07:31:00.000-08:00

My wonderful "bed"-->

Surgery Part II

This morning, Sou woke me up asking to remove the pillows from under his ankles. It was 7am. They were about to bring him down to the operating room any minute now. Sou was wide awake compared to last night. All the morphine and fentanyl had worn off. When they got him rolling down the hall, I followed them to the elevators. I told him that I was going to go to the bathroom to brush my teeth, then head downstairs to get some breakfast. After breakfast, I sat around in Sou's room for a couple of hours. By 11am, I figured the surgery would be over. I walked downstairs to the surgery waiting room. The guy at the desk had to make a couple of phone calls to find out where Sou was. He sent me over to the Surgery Pavilion. The lady at that front desk said Sou was coming out of surgery and that the surgeon would be out to talk to me. I sat on a cushioned bench, against the wall in front of her. As I watched the traffic of patients signing in for their surgery, I realized she was just as busy as a First Care MR on a crazy day. There was always people in line waiting to sign in. The whole sign in process had paperwork, contact info, and insurance stuff. I didn't want to keep bugging her so I sat and waited. After about an hour and a half, I decided to head up to Sou's room. I figured in the end, that's where he'll be. Not even 10 minutes went by when Sou's nurse came in with some chux and some IV tubing. She told me that Sou was on his way back up. It was almost 1pm so I got on the phone and ordered his lunch.

A few minutes later, they rolled Sou in. He was super de duper drowsy. Once the nurses left Sou was knocked out. I used this time to read one of my textbooks so I wouldn't fall behind in class. Later on, this dude from physical therapy showed up. He did several leg exercises with Sou to help him move around in bed and sit up. Not long after, my mom arrived. She hung out for a little bit. After making a big deal about the recall on peanut butter, she ate my bag of nutter butter. Sou's lunch arrived (clam chowder, fruit cup, dinner roll, and a caesar salad. I seasoned it with salt and pepper and buttered his dinner roll. He not quite ready to eat because he was waiting for the nurse and the therapist to leave. I was low on conditioner and body wash and asked my mom if she could bring me to the grocery store down the street. We went to some store I hadn't heard of. I think it was "FQC", TQF", or something. I can't remember. When I came back from the store, Sou was snoring hard. I guess he was still drugged from the surgery. His food was still untouched next to his bed. I figured that this was a good time to take my shower. I grabbed my bathroom stuff and went upstairs. When I walked back into Sou's room, his bed was empty. I was kind of startled because he hadn't gotten out of bed since friday. I noticed his bathroom door was open and the light was on. He was finally going to the bathroom. Yaaay!!! Took long enough. I hit the nurse call light so she could bring him some gauze and stuff. She came in and helped Sou back into bed. I read more of my textbook for a while. I was kind of refreshing to read something not related to action potentials, the autonomic nervous system, or cranial nerves.

Later, we watched a couple episodes of Dog the Bounty Hunter. Then we began watching one of the movies that Mark brought us. About half way through the movie, Sou fell asleep. I decided to pause it because he would be bummed if I watched it without him. Sometime later, the nurse came into the room and took Sou's vitals. I noticed that she didn't bring in his chemo. I asked if they were still doing it. She said they decided to stop his treatment for right now. When were they going to tell me this? I remember Sou asking me in the morning if he got his chemo. I couldn't remember. It turns out, his treatment was stopped a couple of days ago. The nurse said it was due to his infection and said something was also going on with his heart. Something's going on with his heart but I was never informed. I'm here most of the time with Sou and I didn't remember them mentioning that either. So much for "8 days left of chemo".

Tuesday, January 27

2009-01-28T08:25:00.000-08:00

Sou's Breathing Toy-->

Leaving ICU

The nurse woke me up at 7am. I sat up and saw 4 nurses and the female surgeon. It was time for the dressing change. They were going to let me sleep, but Sou wanted me awake and at his side. It wasn't my favorite part of the day. I saw Sou reach over and press the button which activated his shot of morphine. They also gave him more pain meds through his central line. I saw the surgeon pile a bunch of supplies, including the fluff roll, onto Sou's bed. Two of the nurses stood on each side of the bed. They bent his knees to prop his leg up. I wasn't paying much attention to the activities but I noticed they began pulling out the packing from Sou's wound. He began to moan and his respirations increased. One of the nurses was holding a flashlight for the surgeon to see in the wound. I knew that they were just pulling out the packing and that it would get worse once they started putting new ones in. Once the old stuff was out, they let Sou have a breather. They also gave him another syringe of pain medication because he was obviously uncomfortable. A minute went by and then they continued. His moans were louder and his breathing became rapid. Sou squeezed my hand hard. Once it was all over, the surgeon said that there was some dead fat tissue. One more trip to the operating room was needed. They scheduled him for tomorrow morning. He was worried that he would wake up intubated again. Jaime, the doc that visited Sou the most, stopped by.

"Hey, haven't seen you in forever," said Sou. She looked at me and smiled.

"Sou, she was here yesterday and the day before," I told him. He had this puzzled look on his face. Jaime said that he was doing well and he was on day 13 for his chemo. Eight more days to go. Jaime also said that Sou was ready to go back to the 7th floor, out of ICU. I went to sleep for a couple of hours. I think the lack of sleep from two days ago was starting to catch up with me.

When I woke up a few hours later. Sou had this blue looking toy with a nozzle on it. He was supposed to exercise his breathing every hour since he wasn't getting out of bed. At around 4pm, the nurses came back in to do another dressing change. This time, no surgeon. One of the nurses who had watched a previous dressing change was going to do it. They upped his medications. Even though it took longer than when the surgeon did it, Sou said it didn't hurt as bad. He still moaned and pressed his morphine a couple of times. Afterwards, he was really drowsy. He took a bunch of mini naps. By 6pm, they had him transferred back to the 7th floor. They told me it was room 7242. I walked around and found out that it was an isolation room. I went through the door and there was a sink and a huge drawer full of medical supplies. I went through another door and it looked like his old room. It had a similar view to his previous rooms. I unpacked our things and ordered his dinner. He wanted spaghetti, fruit cup, cheese cake, and the usual gatorade fruit punch. After I placed the order, I went downstairs to get my dinner. In the elevator, this lady saw my UAA hoodie.

"I used to live in Alaska," she told me.

"Oh really?" I said. I actually didn't feel like talking to strangers at the moment. I was kinda relieved to see her step out on the 3rd floor. But then she turned around and came back in.

"Wrong floor, I need to go to the dinning area," she said. Crap. It is such a long walk over there. So for the next few minutes, we talked about how she finally felt like Seattle was her home after years of moving. It took her a bajillion years for her to get over Alaska. Blah. Once we were in the cafeteria, I ditched her. I was hoping to get a salad from the salad bar, but they were out of lettuce. What the heck. I turn around and they were serving some Ethiopian stew. Yes it did say "Ethiopian". So I turned to the burgers. I ended up getting a chicken burger. I rushed back upstairs hoping that I wouldn't bump into that lady from Alaska. When I got back to Sou's room, he was knocked out. He stayed that way for another hour until they came in and took his vital signs. Sou went back to sleep while I did online stuff for the rest of the night.

Monday, January 27

2009-01-26T23:57:00.000-08:00

Today I had breakfast in the cafeteria instead of in Sou's room. He hadn't eaten since Saturday night so I figured the smell of eggs and sausage would make him hungry. When I returned, I decided to do homework. Sometimes with all the hospital stuff going on, I forget that i'm still taking classes. I sat down and got situated. Then about 4 nurses and the surgeon walked in the door. It was time for a dressing change. I decided to continue with the homework because I was propped in the corner, out of the way. They decided to elevate his legs as is he was in stirrups. I saw a nurse walk over to the IV pump to increase his Fentanyl. The female surgeon took off her lab coat and put on some gloves. From where I was sitting, I saw her remove the packing. She walked over to the trash and threw it away. Then she started stuffing something into his wound. As this happened, I saw Sou frowning. He also began to pound his fists against the mattress. Obviously they didn't wait long enough for his pain meds to kick in. I remembered Sou once saying that my presence usually makes him fell better. I stood up and went beside the bed to hold his hand. He stopped pounding on the mattress and squeezed my hand hard. I saw the surgeon unwrap a "fluff roll" like the kind from work. I guess that's what they use for packing? Oww..Sou frowned even more and squeezed my hand hard as they finished up. I don't think his Fentanyl kicked in until after the dressing change.

The next couple of hours I worked on homework and went online. A little before 11am, the group of docs walked in the room. This time they brought the pharmacist too. It was nice to see the same crowd follow him even though Sou had changed floors. The leader listened to Sou's stomach. The fellow walked over to the computer to look at Sou's labs. The third-year resident stood by the leader. The other doc, who came to see Sou the most, also looked at his labs in the computer. And just like always, the newbie stood there and did nothing. It's been 6 days since Sou pooped. They were having their discussion and decided that they could remove his breathing tube sometime today. When the tube is removed, then they'll work on his constipation. They also discussed his chemo treatment with the pharmacist. One of the liver labs in the computer was "elevated". I heard them say that the Arsenic Trioxide was more important that the All-Trans, they decided to stop the All-Trans for now. The doc said they wanted to do an ultrasound of Sou's liver and gallbladder some time soon. A few minutes they all left the room and gathered in the hallway outside the door.

The next few hours, I continued to do homework. Occasionally I would get up to check on Sou. Sometimes he would write something on the notepad. He write stuff like, "You take me home", "When can I go home", or "Hungry". He hasn't eaten anything in about two days. A little before 5pm, they nurses came into the room and said they were going to turn off the breathing machine and see how Sou did for about half an hour. Then they were going to draw his blood to check his oxygen. If all went well, they would remove the breathing tube. Sou did really well without the machine, breathing big deep breaths. After the blood test, they decided that he was ready. I didn't feel like watching that event. Sou kept looking at me across the room while a few more people entered the room to prepare. Once there were about 4 people crowded around his bed, I slipped out of the room. It took about 5 minutes, then the nurse poked her head outside the door and told me it was over. I went back into the room and Sou had an oxygen mask on and a smile on his face. He said something and he sounded almost like a robot. He was happy to have that tube out. Despite the fact he was hungry, they weren't able to let him eat yet. They said that some people have difficulty swallowing just after removing their tube. So Sou got ice chips to start. Once they felt like he was okay, he got dinner. He had a fruit platter with grapes, cantelope, watermelon, honey dew, and orange. At about 10pm my mom stopped by on her way home from work. She was happy to see Sou without his tube. Before she left to go home, Sou told her that he wanted to marry me as soon as he got back to Alaska. I think we'll figure that out later. Getting Sou better is priority number 1.

Sunday, January 25

2009-01-26T08:47:00.000-08:00

<--- Sou's IV meds

Post-Surgery

At 4am, one of the surgeons woke me up. He probably told me his name, but I couldn't remember. The surgery was complete. It turns out that his abscess was rather "large". From what I remember, the surgeon said this, "He was sicker than others thought with his blood pressure being so low. Usually when people have operations like this, they tend to become more sick. And that's what he did. He's going to be moved upstairs to the ICU. We're also gonna let his breathing tube stay in for a couple days."

When I heard this, all I needed to do was clarify if he was alright. He said he was okay. It felt like he wasn't telling me everything, like something crazy happened in the operating room. When Sou left for surgery, his blood pressure was 87/32. After he left the room, I began to pack up all our things. I didn't realize how much stuff we had. All the drawers and my bags of stuff I needed to spend the night added up. When I was done, I grabbed half the stuff and headed out to the front desk. They already assigned him his room but he wasn't upstairs yet. When I arrived on the 8th floor, the charge nurse asked me to wait in the family room until they got Sou settled in. I called my mom, Bill (Sou's friend), Irelynn, and Elsie. I figured that they could spread the word.

About 20 minutes later, the nurse said that they would need to put in a central line. Because this would take a while, she said that I could see him before they got started. He was heavily sedated and he had a breathing tube down his throat. Because of his blood pressure and the pain from the abscess, they had to keep him on several different IV medications all at once. The doctor said that because of all the medications, he may not be able to breath on his own. It felt like it took them an hour to place the central line. Later a series of repeat chest x-rays were done. After he was settled in, the nurse said he would be getting a couple units of blood. I unfolded the chair and tried to get some rest. An hour and a half later, I woke up to the sounds of a nurse getting ready to do oral care. She attached a sponged tip to a suction tube and began to clean his mouth. His breathing tube needed to be pushed in about an inch more. When she started to mess with his tube, he immediately bit down.

"No Sou! Let go!" she said. She turned to me and asked, "Can you tell him to stop?"

"Sou, she needs to put your tube in s'more," I said.

"Jheri said to stop Sou. NO," she said as she struggled. Then Sou relaxed as she pushed the tube a little farther down his throat. I could see him begin to gag. I stood by him a few minutes afterwards. I was still tired from the lack of sleep. I laid back in my chair and I heard someone say my name. I looked up and saw Mark and Stephanie in the doorway. I was surprised that they found the room. They hung out for a little bit. One of the docs came in to see Sou. He asked if he had any exposure to wild animals, anyone with TB, or if he smoked or did any drugs. I said no to all of the above. I mentioned that he had a negative PPD in the hospital at Anchorage. He told us that it looked like he had pneumonia. I remember one of the docs saying that it was a possibility during chemo. It got close to lunchtime so we headed downstairs. We probably sat in the cafeteria for almost 2 hours just chatting. We talked about the old times and when we used to live in Hawaii. Time flew for a little bit.

When we got back from lunch, they wanted to do another chest x-ray. We stepped out of the room and I began trying to get a hold of my mom. She wasn't answering her phone. I called Toys-R-Us and they kept transferring me and putting me on hold. Sou was still very sedated. While holding his hand, he stuck out one finger and began tracing letters on his blanket. I asked if he could write and he nodded. I scrambled for a piece of paper. Stephanie handed me a notepad which I failed to return before they left. I placed the pen in Sou's right hand and gave him the notepad. He scribbled something down. I had to look close at it. He wrote "Butt dont hurt".

"OOOh that's good, yea they got you on all sorts of meds so your butt don't hurt. And they said they took out a lot too. They said it was huge," I told him. Sometime during the day I remember the doctor telling me that they drained two cups of pus from Sou's abscess. I pictured the two measuring cups I have at home.

Later on Mike and Tim, PA's I work with, showed up. They were in town for some conference thingy. Finally, people I know. There's been so many new and different faces in the hospital. I was sick of trying to remember the nurse's name because everyday a different nurse came in. It wasn't long til my mom showed up. She walked in and was like, "Oh hey, hi." I guess she recognized them from the time when we all went to Jaxx and Koots. Then she greeted Mark and Stephanie. We all chit chat for a while, mainly about Sou. Mike was eyeing Sou's "cocktail" of IV meds. Yea, Sou had 10 different things being pumped into his veins. I told them that they squeezed 2 cups of pus from Sou's abscess.

"That's like 8 ounces," said Mike. "That's like a can of soda." So every time I saw a can of soda after that, I thought of Sou's abscess. I asked about First Care and how things were back at work. They said they were fine but was starting to notice the depletion of supplies here and there. Tim said we were out of some meds a couple times. It made me miss work. The nurse came in and started doing some stuff. We all got a chance to ask her a few questions. Mom got a call from John saying he made dinner for me. She ran home to pick it up. Mark and Stephanie left after waiting hours for my mom to show up. The PA's left too. After an hour, my Mom came back with Kaliya, John, and dinner. John made fried chicken with mashed potatoes and veggies. A bunch of nurses came in and said they were about to change Sou's dressing. I decided to show mom and Kaliya the family room while they did that. They hung around for a little bit then left. Mom told me to get some sleep. I forgot that I only had an hour and a half of sleep. So I did just that.

Saturday, January 24

2009-01-26T08:21:00.000-08:00

Today at about 4am Sou woke up with pain in his upper thigh again. Because of his pain level, he received morphine again. Two hours later they gave him some pain pills to help. I ordered his breakfast a little after 8am. I included some cereal for myself to spare the trouble of going downstairs. Because Sou's pain has not been resolved, one of the docs ordered a CT of his pelvis. The nurse came in after breakfast and gave him two 1000cc bottles of sterile water with contrast. At that time Sheila had called, so I went near the elevators to talk. During that time, Sou drank one of the bottles. I returned to the room and he began to work on the second bottle. The group of docs came in to the room. Today there was only three of them (the leader, one of the regulars, and the fellow who tried to talk Sou into giving marrow up for research). Today I noticed that the leader was wearing cowboy boots with his snug jeans. He also had a european accent which I didn't think tied well with the outfit. He asked Sou the regular questions about his pain and how he felt today. The regular, which looked kind of asian with short wavy hair, told Sou he didn't really need to be drinking the contrast.

"But you're doing good, it might actually help you poop," she added. It had actually been a while since Sou had a bm; Tuesday was the last time. They also decided to give him a stronger laxative. His pills he had been taking for pain was the likely cause for his constipation. And then some lighter news came.

"We're actually aiming for you to go home on Monday, maybe Tuesday," said the leader. "Where do you guys live?," he asked.

"Mountlake Terrace," I told him.

"He'll need to go to SCCA everyday for his followups. It might be more convenient to find a place closer because of all the traffic," he told me. He was right, it would be more convenient to get a closer place where they had shuttles to SCCA. But places charge about $100 a day. If we needed to stay there two weeks, that's $1,400. To rent a car and drive to SCCA from my mom's place, that would only cost $608.19 according to Enterprise. And that's including the underage fee for me. It was a no-brainer. So, after the docs told us that he did not need to drink the contrast, the nurse came into the room.

"Arrr you done yet?" she asked with her filipino accent.

"No, the doctor just said that he didn't need to drink that," I told her.

"Nooouuuu he needs to durink dat one! The doctor does not know about dat one! Dee peeple downstairs said he needs to pinish two bottles," she said.

"Pour me more Jheri," Sou said as pulled the blankets over him. He still had 3/4 of a bottle left. The phone began to ring. It was mom. Her and Kaliya were on their way and wanted to know if I wanted anything for lunch.

"Anything that's on the way. I don't care," I said.

"Well, we're here in Lynnwood."

"OOh okay! L&L," I told her. "Same thing as last time, bbq chicken with katsu."

"We'll be right there," and then she hung up. About 20-30 minutes later, she called and said they were up the street but needed to find a gas station to inflate her tire. Her "tire pressure" light came on. I hate it when that happens. Even though the tire looks okay, that light is always in the corner of your eye. And half the time I can never find an air pump in Anchorage that works. Later on my mom and sister showed up. They took turns playing games online off my laptop. Kaliya spotted several white hairs on the back of my head and wanted to pull 'em all out.

"I usually do this to Auntie Chit, Jheri and she gives me money after," she said. "Are you gonna give me money?"

"No," I replied. She continued to pull out the white hairs anyways. I made a deal with her. Ten cents for every strand. She ended up finding 28. I only had a dollar on me and issued an IOU.

When Sou was finished drinking all of the contrast, the nurse came in to start an IV because she said that the PICC line cannot be used for contrast. She also gave him a couple of pills and sent him downstairs for his CT. Sou requested that I follow him downstairs. I had to wait outside when they did the actual CT so I waited outside the door. I noticed that they had a bathroom nearby. How convenient! Sheesh. They need a setup like that at Prov. for all the poor patients getting barium enemas.

When it was time for Sou to hop back into his bed, it was obvious that he was having difficulty. Today his pain was worse than ever. Even to scooch up in bed was such a chore. After 30 minutes of returning back to his room, my mom decided that it was time for them to go. I walked them downstairs and decided to get dinner on the way back. Even though it was still early for dinner, I didn't want to come all the way back downstairs an hour later. When I returned, Sou was sound asleep. Occasionally he would wake up to use the bathroom or just because of the pain. At 6pm he was issued some oxy. That obviously was no help. While the nurse came in to take his vitals, she said, "Yea Sou, I think you have an abscess." It turns out that when his fever went away, he was given decadron. Yesterday they decided to discontinue the decadron to see if his fever would return. Well, today, his fever returned. If I recall, when his pain started I remember mentioning to the doctor that he had a suspected abscess in Alaska. They "peeked" at it and said it was fine. The second doc "peeked" at it and the word "cellulitis" came out of his mouth. On a third occasion, I heard "possible abscess". Whatever it is, it needs to be resolved.

The next couple of hours was crazy. After getting his daily meds and vital signs taken, his nurse mentioned that Sou's output had been low. He received some lasix earlier and still hasn't been urinating much.

"Next time you go to the bathroom Sou, can you call me right after," she told him.

"He just went like, 5 minutes ago," I said.

"Oh good, we'll do a bladder scan now then." She left the room for a few seconds then returned with the cart. The machine said that Sou still had 1000cc of urine still in his bladder. She asked if the doctor had been in to talk to us regarding the results of the CT earlier. I said no. She mentioned that they did see some inflammation around the bladder which would explain why he wasn't urinating much. Also, his blood pressure was really low (92/35). His fever was over 103 again.

Shortly after, the doc on shift (never seen him before) came in and said that Sou actually does have an abscess. He said had Sou roll over to his side so he could "peek" at it. He decided that he would have a surgeon come look at it. Shortly after, they rolled in the portable x-ray machine to take a look at his chest. Later this dude named Steve came by. He looked a lot like my cousin Dawne's husband. I looked at Sou and said, "Hey Dan's here!"

"Nuh? Wha??" he said. Steve walked in and Sou knew what I was talking about. Once again, Sou rolled on to his side in a huge amount of pain. He poked at it and touched it making Sou groan. When it was all over, he took off his gloves and said, "Okay, nothing to eat or drink. You'll probably go into the operating room tomorrow morning." Then he left the room. They also decided to put a foley catheter in too. When they said that I almost went into escape mode again, trying to think of ways to not be present when that happened. Two nurses came in and got the job done in about 5 minutes. It wasn't as eventful as I thought. No kicking or screaming. Not one peep out of him. The next task was for him to overcome the surgery safely.

Around midnight, Steve and a female surgeon came to Sou's room. She also wanted to take a peek at his backside. They said that his platelets were low and that he would need a transfusion for the surgery. Arrangements still needed to be made before they could tell us when the surgery would take place. It was most likely in the morning. At 1:45am the nurse walked into the room and said, "I guess they're ready for you now."

"Like, surgery now? That was quick," I said.

"Yea I know!" she added as she wrapped the blood pressure cuff around Sou's arm. She needed to check his vitals one more time before they brought him downstairs. His blood pressure 87/32 after already receiving 1 bag of IV fluids. When he left for the operation, I decided to take a nap.

Friday, January 23

2009-01-24T01:11:00.001-08:00

Kaliya's "Get Well" Card to Sou------>

Earlier in the morning I could hear Sou trying to wake me up. I heard him order his breakfast and he kept telling me to go downstairs to get mine.

"Wake up! Breakfast time! Go get your breakfast," he said. I ignored him because I was too tired and still half asleep. At about 8:30a.m. I finally woke up. I made my self presentable enough to walk down the hall to the bathroom. I wasn't too hungry, so I just had a granola bar. Later on, Irelynn called. She said that she was getting the house keys from Michelle today. I also received a text from Michelle saying that Brad left the place without taking the trash, doing his dishes or emptying the rice cooker. The rice cooker was all moldy. That combination left the place smelling real good. I told Irelynn to restrict Brad from any internet use until he cleaned the entire place. I went downstairs to grab some lunch. To my surprise, they were serving chicken adobo. YUM. I guess i've gotten used to the long walk to the cafeteria because it doesn't seem that long anymore.

After lunch, Sou took his second nap of the day. Mark gave me a call to confirm tomorrow's plan. We're suppose to be going to the movies and then a sushi/seafood buffet. We all know how much Jheri needs a buffet right now, but that's okay. I'll just bottle the whole day's hunger until then. The group of docs made an appearance a little before 1p.m. The same group as yesterday showed up (3rd year resident, the leader, the fellow, newbie) in addition to the nurse and one more doc. The pain behind Sou's leg has become more bothersome. They switched his antibiotics yesterday and would like to give it some time for it to take effect. In the meantime, they decided to keep giving him something for the pain. Before they left, I asked "How long is it before he can go home?"

"Well, if this antibiotic does what we want it to do, he'll need to be on it for 10 days. It also depends on his temperature staying down," said the leader of the pack.

"Also, right now, they're not letting him leave this floor. At what point will he be able to roam around?" I asked.

"Why isn't he leaving the floor?" he said as they all turned to the nurse. Startled by the attention, she quickly reached into her pocket for a piece of paper.

"Right now he's on neutropenic precautions," she responded. As a group, the docs decided it was okay to remove those precautions.

"Yea, he can leave to get some fresh air or to get some coffee. Just don't leave for 5 hours, we'll send out 'search and rescue' if you do," he joked. With that settled, I felt a little better. We could go on mini field trips to keep him from getting so bored.

Sometime after another nap, he woke up with pain in the back of his legs again. This time I noticed it was worse. He had a really hard time getting in and out of bed. He even had a hard time walking. The nurse came in because he wanted to take a shower. She wrapped up his arm so his PICC wouldn't get wet. Because of his increased pain, the nurse got the okay to give Sou some morphine. To start him off, they wanted to try 1 mg first. We planned on going on a walk afterward. I asked if they would still allow him to walk with the morphine in his system. The nurse said that she would have to walk with him first before going off on his own. After about 15 minutes, Sou didn't feel like walking anymore. He was happy and relaxed.

When it came around to dinner time, instead of taking the elevator downstairs, I took the stairs. I walked the endless hallways. On the way back, instead of taking the elevator back up to the 7th floor, I took the stairs once more. I didn't feel the burn until I reached the 4th floor. I decided that since I was already half way there, I should just go all the way. By the time I reached the 7th floor, I was soo out of breath. It was the first time using my inhaler since leaving Alaska. I figure if I do that at least once a day, i'll get use to it. By the time Sou gets released, it'll be easy as cupcake.

After dinner, we watched Jerry McGuire, Liar Liar, then Jurassic Park. During Jurassic Park, the nurse came in to do the routine vitals. I mentioned that Sou's feet were beginning to swell up and asked if they should be elevated. She said yes and got two pillows to place underneath his ankles. She recommended that Sou do more walking around, starting tomorrow morning.

My Chicken Adobo

Sou's Fruit Platter with Clam Chowder

Thursday, January 22

2009-01-23T08:23:00.001-08:00

After breakfast, a male nurse came in to check Sou's vitals. He also gave him some decadron and lasix. While shooting the meds through Sou's PICC line, he asked us about last night's episode of Lost. Then the three of us went into discussion. We went over topics like why all of them need to go back, who requested Kate and Aaron's blood tests and the wierdness of time travel on the island. Then he left us alone for a couple of hours. Sou continued to make numerous trips to the bathroom to go number 1 while I did more sudoku. Mom later called to confirm our Bellevue exploration for the afternoon. I told her to bring some clothes over. Yesterday while I did laundry I discovered a shower upstairs for family members to use. Now I don't need to make frequent trips to my mom's place and I could be here whenever the docs talk to Sou. It's usually a foreign language when they talk to him so i'm usually his translator.

Sometime before lunch, the group of docs making their rounds stopped by Sou's room. There was a new attending physician. Who knows where the other one went, but I heard that they rotate every couple of weeks. You could tell he was the leader of the pack by the way the others acted. Besides the fact that he was the only one not wearing a white coat and just wearing a suit and tie, every time Sou would answer one of their questions, they would glance at him. It was like they were looking at him for an answer or an approval. You could also tell who was next on the totem pole. Doctor Hobbs, the 3rd year resident, did a lot of the talking while the other one would say stuff here and there. This other girl, who I haven't seen before stood in the corner and didn't say a word. I assumed she was new. There had been some swelling on the backside of Sou's leg. The main dude put on some gloves and felt the area.

"Does this hurt?" he asked.

"AHHH"

"How about this?"

"AHHHHH, yea," Sou replied. He took off his gloves and washed his hands. He said that he didn't think it was an abscess and it was probably some type of cellulitis. Because Sou was already on hardcore antibiotics, they said they would give it another day. If there was no improvement by tomorrow, they would do a CT scan.

When my mom picked me up, we drove through Bellevue. After a while, we decided to head to downtown Seattle. We ended up going to Pike's Market and hanging out there. This one place had $4 happy hour specials on appetizers. We ordered a a bunch of appetizers and had those for dinner. It was dark and really cold when we left. Not Alaska cold though. The traffic on the way back to the hospital was alright. I'm not sure how it was on the way back to my mom's place.

During one of the times the nurse was taking his vitals, she asked if I had seen the VHS collection upstairs. I did. I saw a couple of tapes that were watchable.

"What? Really? Hook it up!" Sou said as he looked at me.

"Yea later," I replied. Before the nurse left, she decided to change Sou's dressing for his PICC line. When Sou took a shower earlier, water had gotten it wet. After that was taken care of, I went upstairs to get some tapes. It didn't take me long time find some good tapes which surprised me. I saw a bunch but decided to only take 4 back to the room. I got Vertical Limit, Jerry McGuire, Liar Liar, and Jurassic Park. Ah the classics. Sou never seen Vertical Limit so we put that on first. After about 30 minutes, we began to fall asleep. We turned it off and called it a night.

Sou's chemo and antibiotics

The view of the stadium from his room

SOU'S PICC LINE

2009-01-22T22:09:00.000-08:00

SOU GETTING HIS DRESSINGS CHANGED.

A PICC line is a more recent development using a line which is inserted into one of the large veins in the arm (usually near the bend of the elbow) from where it is threaded into the superior vena cava. The initials PICC stand for peripherally inserted central catheter.

PICC lines are normally inserted as an outpatient. Some local anaesthetic cream is applied to the skin which usually ensures the insertion is painless. The procedure takes about 30 to 40 minutes. Once the PICC line is in place it will be taped firmly to the skin with a special transparent dressing to stop it coming out of the vein. A chest x-ray will then be taken to check the position of the line before it is used. The PICC line can be used for taking blood for blood tests, giving chemotherapy drugs or giving blood transfusions.

http://www.cancerbackup.org.uk/QAs/569

Wednesday, January 21, 2009

2009-01-22T08:38:00.001-08:00

After ordering Sou's breakfast, I walked down the hall to use the bathroom and brush my teeth. When I came back, Sou's vitals were getting taken again. They were taking his temperature in celsius. It was 40.8. I hopped on the computer and googled a converter. It said it was 105.44 F. It was crazy how he would be hanging out and not feel the 105 fever. His resting pulse was 134 and his O2sat was 85%. They put him on his oxygen and it increased to about 90%. They gave him some Benadryl so he could get some rest. While he was sleeping, I went upstairs to the 8th floor to get some laundry done. They had a lounge set up for family members where you could hang out and do laundry. They also had a coffee maker and a microwave. It was nice that they had the washer and dryer. It was the kind where the dryer was stacked on top the washer. The downside was that you could only use one at a time. So once I was done with my first load, I put it in the dryer and had to let it sit there til my second load was done. It's okay though, I got a lot of sudoku done.

At about 12:30p.m. I went back to Sou's room. They had him in a wheelchair getting ready for another x-ray. He was still breathing heavily and his eyes were red. Once again, he claimed that he felt okay. The x-ray they had taken in the middle of the night was with a portable machine. The machine could only do one view. They saw some fluid in his lungs and wanted him to go downstairs to get 2 views. With his fever being in the 105F range, his racing pulse, low blood pressure, and his visible shortness of breath, I was concerned. Just like other times, the nurse said they would keep a close eye on him. Before he returned, I ordered him some lemongrass pork, jasmine rice, a fruit cup, broccoli, a dinner roll and a gatorade fruit punch. Five minutes later, he hopped into bed and fell asleep. My mom was supposed to get off work at 2:30p.m. and stop by later on.

While Sou was taking a nap, my mom and I ate lunch/dinner at a little italian restaurant down the street. Even though it was just up the street, it probably took us 20 minutes to get there. First, my mom was in the wrong lane, then she got into the right lane, then decided we should go to Bellevue. We saw how traffic was going so we turned around again and spotted the italian place. Then we circled the block a couple of times to get parking. I had a wonderful helping of carbs and some salad. It was good food. Sou usually calls me frequently when i'm not at the hospital. To my surprise, he only called once. We got back to his room and the nurse was taking his vitals. His temperature had gone down and his O2sat was at 96% because they had him on oxygen. His pulse was still racing. After my mom used the laptop for a few minutes, she said goodbye and headed for home. About 15 minutes later, she called saying that she was stuck in traffic.

"Where are you? Are you like, halfway there?" I asked.

"NO look outside your window! I'm up the street on that bridge," she said. That sucks. I'm not liking this whole traffic thing even though i'm never really stuck in it.

For the next couple of hours Sou watched t.v. and I worked on Sudoku. The season 5 premiere for LOST was coming on at 8p.m. It was supposed to be a 2 episode deal. After watching that, we didn't have a whole lot of answers, just more questions to ponder on. Before we went to bed, the nurse said that they had switched his prednisone to decadron and gave him that and lasix. Sou probably went to the bathroom (number 1) about 3 times in half an hour.

Tuesday, January 20

2009-01-21T08:23:00.001-08:00

Kaliya missed the bus again today, so we had to drop her off to school. I woke up and looked at her. She was wearing a long, blue dress. She insisted that she wear a dress with the sneakers I bought her last night. It sooooo did not match, but that's what she wanted. When we came back from dropping her off, I took a shower and packed up my things to get ready to go back to the hospital. One of the nurses said that they had a washer and dryer for family members on the 8th floor. I packed up my laundry and brought it with me.

Sou was already drowsy from his morning medications. I worked on my homework until it was lunch time. Once again, I ordered Sou's lunch and went down to the Plaza Cafe to get me some grub. Sou's fever had returned and his blood pressure was low again. He said he felt fine and couldn't even tell he had a fever. The nurse came and gave him some Tylenol.

A few more hours passed while Sou made some phone calls and I went online. He called his family down in California, my gramma, my dad and First Care. I had a short chit-chat with Kay, Mike and Jocelyn just to see how things were going at work. I wish I could be there to help because I know how things can turn crazy in a matter of seconds. After that, Sou decided that he wanted to go on one of his walks. He got dressed, and like usual, we headed to the elevators to hang out in the lounge. It was starting to get dark when we looked out the windows. You could see the highway in the distance.

"That's what you take when you go to mom's place," I told him. I also told him how I could probably drive there on my own and back to the hospital. But if I took one wrong turn, i'd be screwed. In a few weeks i'll probably be okay. We starred out the window for a few more minutes. A couple of guys went over to the elevators and waited for the next one. One of them started hacking a cough. If I remember correctly, there's signs posted on this floor that restrict anyone with respiratory illnesses. I grabbed a face mask and handed it to Sou. They had these stations set up around the floor with hand sanitizers, tissue and face masks. We continued down the hall a few minutes later and came across this hang out area for patients. It had some magazines, chess, a t.v. , and an elliptical. We looked out the window from that room, then Sou decided that he needed to go to the bathroom. When we returned to his room, he didn't feel like walking around. It was almost dinner time and once again I ordered his dinner. It usually takes 30-45 minutes for his meal to arrive so I figured that I would wait 15 minutes before I head down to the Plaza Cafe.

I returned to his room with a chicken burger and onion rings. Sou immediately began sniffing the air while the nurse took his vitals.

"I need some grease!" he said as he eyed my burger. I didn't mean to torture him, but I thought his food would have arrived by then. I offered a bite but he declined. He ended up eating some spinach and mushroom fettucini. I thought it LOOKED good. But he said it was horrible. Seems like nowadays things have been mellow around the hospital. Not so much IV fluids and blood draws. It's just the usual "pill-taking" around the clock with a little bit of chemo here and there. I'm thinking about making a run to Toys-R-Us to pick up some board games to keep us occupied. After all, my mom gets discount.

Sometime in the middle of the night, the nurse took the boyfriend's vitals again. He had an axillary temperature (under the arm) of 105F. Like always, Sou said he felt fine and couldn't tell that he had a fever. They asked me to leave the room for a minute because they wanted to get a chest x-ray. I walked down the hall as they rolled in a portable x-ray machine. A few minutes later I returned to his room. I propped his fan up on his bed next to him and the nurse gave him more Tylenol.

Monday, January 19

2009-01-20T10:45:00.000-08:00

Once again, Sou woke me up in the morning so I could order his breakfast. My mom called me shortly after and asked if Kaliya could hang out with me in the hospital for the day. Because it was a holiday, Kaliya didn't have school. I took the elevator downstairs to get Kaliya. We both didn't have breakfast yet so we headed to the Plaza Cafe. Because it was a holiday, the cafe was pretty empty. I had some of their scrambled eggs and bacon. The eggs were similar to the fluffy eggs you get from McDonald's. It was alright if you add salt and pepper. Kaliya grabbed a japanese rice ball and a banana. Afterwards, we went upstairs and sat in the lounge so Kaliya could work on homework. When she got board she brought out a load of those "Goosebumps" books from her backpack. I remember when I used to read those. She had a few I had read back in the day. We ran into Sou in the hallway because he was doing his laps around the floor. Before long, it was lunchtime.

We had to choose between thai chicken curry, vegetarian lasagne, or pot roast with mashed potatoes. Otherwise, they had some sandwiches, sushi, and salad in the cooler. I wasn't sure how long those were sitting there though. Kaliya ended up with a large plate full of pot roast with rice and gravy. She ate it all. I had the curry which was pretty good. Before heading back to Sou's room, I decided to show her the gift shop. They had all kinds of candy and magazines, lots of stuff animals too. Kaliya kept saying, "We should get Sou a card!!!" So we looked through their greeting cards. I mentioned to Kaliya that Sou likes cats. We found this cute card that had a cat lying in a hospital bed with its leg in a cast up in a sling. She also found a tiny leopard that roared when you squeeze it. We signed it on the way up to the room. When we returned, Sou was lying in his bed watching t.v. again. Kaliya walked into the room and handed Sou his card and leopard.

"Awww," he said. He skimmed through the card.

"Squeeze it," I pointed to the leopard. He flinched as it roared. Kaliya sat on a chair and began to take off her boots. WHEW! Her foot stunk soo bad. She was in a phase where she preferred not to wear socks. OMG. YUCK. NASTY. I was like, "KALIYA! Put your shoes back on!!"

"Okay Jheri," she replied. Sou's fan was on so it circulated the stench around the room in two seconds. I saw Sou make a disgusted face. Kaliya got on my lap top later on to watcher her "Inuyasha" dvds while I took a nap. There was nothing else to do and it would pass the time.

When I woke up, Kaliya was still watching her dvds and Sou was watching some cartoon. Mom was supposed to pick up Kaliya and I on her way home from work in about half an hour. I picked up the phone and ordered Sou's dinner. Then me and Kaliya got our things packed and headed downstairs to wait for mom. Once we got in the car, Kaliya fell asleep.

"MOM, Kaliya needs new shoes! Can we go get her shoes, like right now?" I asked.

"Sure, where do you wanna go?"

"Anywhere."

"Kay, i'll take you to Fred Meyer," she said. We went to a Fred Meyer in Lynnwood. Since we were there, we bought groceries too. Kaliya's shoe size was already a 6 1/2. My mom started freaking out. I remember in one of my textbooks that it says a kids growth spurt starts with their hands and feet, then moves on to their long bones. So I just told her to prepare for her height to shoot up. Kaliya was almost as tall as me. I know she'll be taller.

It was around 8 o'clock when we got home. Kaliya began asking for an ice pack. She had a headache so I offered her a Motrin.

"Uh...Jheri i'm scared. I don't know how to swallow that," she told me.

"It's small Kaliya. Just like candy. Put it in your mouth and start drinking water."

"I can't," she said. Then my mom heard us and she took over the situation.

"Dammit Kaliya, you're 9 years old!" she yelled. "Now swallow it!" My mom tried hiding the pill in a spoonful of yogurt. But that didn't help. In the end, Kaliya ended up chewing the Motrin. While I fixed dinner, Kaliya took a nap. I cooked some pork with garlic and onions, simmered in some cream of mushroom. By the time she woke up, she was feeling better. Kaliya ended up downing this huge plate. I thought it was crazy how she could eat a much larger portion than I can. Then she started asking for seconds. She got denied. After a few minutes, Kaliya was back in bed fast asleep. My mom, John, and I were in the livingroom talking about their cat. I was telling them about how my cat loves to get dressed up. I saw a plastic bag and tied it around Ella's neck like a cape. She gave me no resistance. My mom and John were amused at how she just walked around like normal, but with a cape. John picked up Ella's toy and threw it down the hall. When this happened, Ella went after it. The sounds of the cape flapping freaked her out as it something was chasing her. Down the hall she went. She ran soooo fast, she went right into the wall. She disappeared under the bed and came back into the living room even faster. I couldn't see any cat, I just saw a flying plastic bag. I've never seen any cat run that fast. It freaked me out so much, I ended up jumping on the couch. It was hard to tell which direction she was headed to next. After we had time to reflect on what happened and got all our laughter out, we went to bed.

Sunday, January 18

2009-01-18T23:46:00.001-08:00

Sou woke me up at 6:15a.m. to order his breakfast. When I called, a recording said they weren't open until 6:30a.m. Fifteen minutes later, I ordered him some scrambled eggs, bacon, sausage links, corn flakes and a fruit cup. It was too early to get up for no reason, so I went back to sleep until 8a.m. when Sou woke me up again. I think it was to turn up the heat in the room. His appetite seems to be good. This is probably the third day that he's eaten all of his breakfast. I left the hospital around 11a.m. to spend time with my mom and sister. Sou was already asleep when I left because of the meds they gave him.

It was a clear day. My mom made it seem like they haven't seen sun before. Seattle rains a ton. She kept complaining about the sun getting in her eyes and how the sun was hot and blah, blah, blah. After I took a shower, my mom told me to take Kaliya to Blockbuster while she got ready. She gave me directions like, "Go to this light, turn left. Then go all the way down and make a right by the casino. Then go all the waaay down and you'll see Blockbuster." I was in the wrong lane when Kaliya yelled, "BLOCKBUSTER!!!!" Right now she's into that anime Inuyasha. She kept talking about how excited she was to rent part II and III. She also mentioned crying during one scene. Along with her movies, I bought her a bucket of popcorn with a Reese's, Coke and Sprite. I also took her to Baskin Robbins next door. While ordering her ice cream, my mom called and said to pick up some lunch for Kaliya. Because Safeway was in the same building, I took her to their deli. She wasn't interested in the chicken wings or the potato wedges. So I ended up taking her to their chinese section. She starred at a tray of the "General Tso's Chicken" and looked at the asian lady behind the counter.

"Excuse me! Can I taste that?" she asked as she pointed her finger against the glass.

The lady grabbed a toothpick and poked a small piece of chicken.

"Be cay ful. Is a lil bit spy see. You know. Some kids don laik spy see," she said as she handed it to Kaliya.

"MMMMM" she said as she looked down at the tooth pick while chewing.

"Good?" I asked.

"MMM hmm!" she nodded. I then told the lady that she'll have the chicken with fried rice. We went back to my mom's place to pick her up. Off to the outlet mall we went.

It was probably a 20-25 minute drive north of Mountlake Terrace. I felt a tingle of excitement when I saw the names Guess, Coach, Juicy Couture, and a couple others along the outside of a huge structure. The parking lot was packed, but we got lucky and found parking right in front. The first store we hit up was Coach because it was the first one we spot. It was jammed packed. There was this lady who was handing out "10% off" coupons at the door. And to make things even better, there were signs all over that said, "Take an addition 50% off clearance items". AHHHH it was so awesome because almost half the store was on clearance. I ended up getting a wristlet for $35, a small bag for $45, and another one that was bigger for $140. We stopped in several other stores after that but I didn't buy anything else. I was too excited about those purses. It was one of those things where I didn't wanna put the shopping bag in the back seat. I wanted it to sit in my lap so I could look at the stuff while we were driving. On the way back to the hospital, we stopped at L&L for some grub. My mom went ahead and started to order. Then she was like, "Okay Jheri, what do you want?"

"I don't know.....Lemme see..." I said as I starred at the menu. I couldn't decide what to get. EVERYTHING looked so good. I was debating between the chicken katsu and the barbeque chicken. So then I just decided to order both. LOL. Yes, both. Mini sizes of course. The lady was like, "Well, if you want both, you can just have half and half for a regular plate. It's cheaper. They didn't have the combination plates already on the menu there. I guess you just make your own. Like always, they served me with an oversized portion of chicken, rice, and mac salad. I got the food "to go" because it was already getting late and I know Sou wanted me back at the hospital by dinner time.

When I opened the styrofoam "to go" plate, the aroma of freshly barbequed chicken filled the air. Sou was curious to see what I got. I showed it to him and offered him a tiny bite. To my surprise, he turned it down. How disciplined! His dinner arrived 5 minutes later. He ordered not one, but two cheeseburgers and some gatorade. It was nice to see him eat like he normally did. Sometime during dinner, the nurse came and said that he should walk around the floor during the night. He hasn't been walking much. All he walks to is the bathroom which is 4 steps away from the bed. He's been like that for a week now. After dinner, he put on some pajama pants and a shirt. I grabbed a cup of gatorade just incase he would want it. We started our walk towards the lounge near the elevators. After about ten feet, Sou began taking in big breaths of air.

"Ahhh that feels good!," he said.

"What, the air or walking?" I asked.

"The air," he continued. I began to walk and every time he kept falling behind. He wasn't walking as fast as before. I had to keep waiting for him to keep up. He also seemed to waddle. It was probably because he hasn't walked much in so long. By the time we reached the lounge, he looked out the window. There was a hillside full of lights from the houses and a highway that ran along it.

"Wow, nice city," he commented. Little did he know, that was just a hill full of houses. In the ambulance ride to UWMC Sou missed the entire view of downtown Seattle. Later on in our walk we encountered other windows where he could see the streets and the Husky Stadium. At one point he said he couldn't wait to get outside. The confinement of a hospital room was starting to get to him. How much fresher can the air of the hospital hallways be than the air in a hospital room? After about two laps around the floor we went back to his room.

The nurse came by later on with his chemo and a bedside commode. She came in, sat on it and said, "This is now your new best friend!" Because any type of bleeding could complicate the chemo treatment, they had to keep an eye on his stool for blood. From now on, he is supposed to go in the commode and call for the nurse to look at it. She hooked up his Arsenic and gave him his pill. Before long, Sou was asleep again.

Saturday, January 17

2009-01-18T09:11:00.000-08:00

This morning Sou's blood pressure was still low, in the high 80's over high 40's. They're still giving him all sorts of stuff through IV varying from blood to potassium with normal saline. On Sunday he weighed about 213lbs. When he was admitted to UWMC they weighed him and the scale said 205. Now, three days later, he weighs 225lbs. If I jumped up 20lbs in three days, I'd flip out. Once again, Sou chowed down on breakfast (corn flakes, fruit, sausage and french toast). He's turning in to a breakfast person. I left to go to my mom's place to take a shower before lunch. While I was gone, Sou forgot to order his lunch and had to sit it out. Actually, I don't think there's certain time frames to ordering food here. As long as the order's placed between the kitchen's hours of operation. I should probably tell him that.

While I was gone, my mom dropped me off at a mall near her place then went to drop off Kaliya at a birthday party. While she was gone I managed to find an Aeropostale, Forever 21, Bath & Body Works and a Victoria's Secret. I also stopped at a toy store that had everything 50% off. I got Sou a couple of those things where you have to figure out how to remove the chain or the rope from the wierd looking metal piece. Hopefully that can help him pass the time while in the hospital. I headed off to the food court because I didn't have anything to eat all day. I ordered my food from Panda because it reminded me of Hawaii. It was probably the best food i've ate since coming down here. By the time I was done eating I got bored. It was wierd not having Sou at the mall with me. We usually do things as a pair. I called my mom and she was already on her way to come get me. Perfect timing.

My mom brought me back to the hospital about 5 hours later. His fever was getting really high again (close to 104F). I told him to request for Tylenol and some ice packs. With Tylenol, his fevers have been going down to the low 100's, sometimes in the 99 range. As long as he's not in the 103's he seems to feel fine. Before I took an afternoon nap, a nurse came in to draw his blood once again. She took a couple syringes worth for blood cultures. Before she left the room, Sou asked her for a face mask to use while he goes to the bathroom. Apparently, since the chemotherapy started, he claims that his urine reeks. He says it's so bad that it makes him cough. The nurse says it could be the urine smelling really bad or just Sou having a heightened sense of smell from the treatment. I wasn't going to investigate further.

I woke up at around 8p.m. to find out that I completely missed dinner hours. The Plaza Cafe was already closed. I decided to walk through the maze of hallways to the vending machines. On my way there, I only saw one other person. It was like a scene from one of those hospital horror movies. I saw some lights flickering like they were about to go out and it was quiet like non other. When I got to the vending machines, most of the stuff were sold out. The machine with the frozen burritos and t.v. dinners was "Out of Order". My only option was a ham and cheese sandwich. Before I headed back to Sou's room I spotted a package of chocolate wafer bars. YUM. Haven't seen those in forever. When I got back to the room, I opened up the sandwich. I wasn't that great. Tasted kinda gross actually. I ate half of it because there was nothing else.

After a few episodes of LOST Season 3, the nurse took Sou's temperature again. He was at the 104 point again. She brought him more Tylenol and several ice packs to help cool him down. His blood pressure returned to normal, finally. We fell asleep later on after watching No Reservations, the movie with Catherine Zeta Jones and more LOST. This hospital has a bajillion channels and a lot of good movies.

Friday, January 16

2009-01-17T08:17:00.000-08:00

It was about 7a.m. when I awoke to the sounds of Sou's nurse taking his vitals. Sou had slept through the night after receiving two doses of Benadryl. It was probably the most sleep he's gotten since being admitted to the hospital. His blood pressure was 89 over 40 something and the nurse was concerned. His O2sat was 89 and she put him on some oxygen. I also noticed that he had tachypnea and I could see his heart beating through his chest. Several minutes later, while the nurse was listening to his lungs, a young female entered the room. She was one of the physicians on the floor. She also listened to his lungs and asked Sou a series of questions like, "Are you feeling okay?" and "Do you feel dizzy?" After she agreed that he seemed okay, she said that they would order a chest x-ray to be done just to be sure. Both the nurse and doc left the room while, giving time for Sou to eat breakfast. It was past 7a.m. Alaska time and I figured that I should give First Care a call to give them updates. I spoke with Jeanne, Tim, and Elsie. While in a conversation with Tim, a crowd of 7 docs walked into the room. I was like, "Okay, doctors are here. Gotta go!"

"Okay bye," he said and we hung up. It's great how he always cuts it short when necessary. Not like those people who you tell, "OKAY I HAVE TO GO" and they linger on the phone. Like, "OH REALLY? GEE, how come?" Well, even though there were 7 of them, only 3 spoke. They asked the same questions about how he was feeling. One doc asked about his fevers. It was awkward how 7 docs were standing around him in that tiny room. It was decided that he should receive a bag of platelets. They all left and the platelets arrived.

One nurse verified his name on the arm band and another nurse verified the name on the bag of platelets. They started to joke about how long his name was. Seems like no one here has seen a longer name. When my mom stopped by on Wednesday night, she forgot his room number. She asked the people at the desk and said, "I can't remember his name, but it's really long."

"OH I know exactly who you're talking about! It starts with an 'S' right?" Then I started telling the nurses how the cafeteria always knows exactly who i'm talking about when I call to order his meals.

"His last name is S-Y....."

"B-O-U-N-H-E-U-A-N-G?" they would ask.

Sou was given a cup of meds including some Tylenol and a Benadryl. Then it was nap time for Sou. Later my mom picked me up and we went to Target to get Sou some stuff.

When I returned, the nurse told me that they were concerned about his blood pressure being so low again. She was going to notify the doc and have him see Sou. After a few minutes Sou dozed off again. His room phone began to ring which woke him up. I answered the phone. It was my mom. While on the phone with her, Sou was trying to tell me something. I looked at him and said, "What?"

"Miscontrol," he said.

"WHAT????"

"MISCONTROL. You know like, MISACCIDENT?....SHEESH!!" he told me as he rolled his eyes. I was like wtf? I think the medications were getting to him lol.I don't think those are legit words. But whatever.

Later on Sou's nurse and one of the other nurses came into the room with a bag of his Arsenic Trioxide. They both verified his name on his wrist band and the IV bag. This was his second dose. Along with the IV, the nurse gave him several pills of All-Trans and a Zofran. Sou was also having a headache again that wasn't relieved by Tylenol so they gave him an Oxy.

An hour later after his IV was done, the nurse came in to check his vitals. Sou woke up when she came in. He was obviously more talkative and loud. Saying stuff like, "I should go visit my neighbors." When I asked how he was feeling, he said, "I feel like I can run around the building! WHOOOP!!!" Yeah, it was kinda creepy. You could tell that the meds totally got to him. The nurse said, "Oh, I think that Oxy is working huh?"

"Oxy? What's that?" he asked. She looked at me and whispered, "I only gave him a small one" and smiled. Sou said a bunch of other stuff that didn't make sense before we fell asleep for the night.

Thursday, January 15

2009-01-16T07:27:00.001-08:00

I had spent the night at my mom's place. I awoke to the sound of the cat "Ella" running across the living room carpet. That cat is crazy. Cute, but crazy. Today's plan was to take a shower and bring Sou his favorite barbeque chicken from L&L. He hasn't been eating much because he said that all of the hospital food had no taste. I disagree. With the help of the salt and pepper packets they set on the tray with the food, i think it tastes pretty acceptable. So when I mentioned that I had seen an L&L down the street and he said, "MMMMMMMM!!!" I figured that he could use the bbq chicken. I called him to confirm his desire for chicken. To my surprise, he declined. He decided to stick to his hospital diet. Unlike the diet Providence had him on, the nurse here said that as long as all foods are throughly cooked and all fresh fruits and vegetables are cleaned well, it would be fine.

When we arrived at his room, they had taken Sou somewhere. Since he wasn't there, we went down to the "Cafe Plaza" to get lunch. We took the elevators down to the 2nd floor. Then we (my mom, her bf and I) followed a series of signs through a maze of hallways. Their food was very ethnically diverse. I played it safe and had a chicken ranch salad. By the time we got back to Sou's room, he was already lying in his bed with the nurse at bedside checking his PICC line. Between the time I had left last night and the time I returned, they gave him 3 bags of plasma, 1 bag of blood, 1 bag of potassium, drew more blood, inserted a PICC line, did a heart scan, did a urine culture, and gave him non-skid socks. He looked up at me and said, "Where'd you go??" I could tell he was worn out. Every time he would fall asleep, someone would come in to either take his vitals, take fluids, or give fluids. My mom, her bf and I spent the next hour and a half keeping Sou company. We then left to pick up my sister so she could visit Sou as well. Kaliya really, really wanted to visit Sou. When she spoke to Sou over the phone after finding out about his condition, she sounded as if she was about to cry. Her and Sou got along really well. He knew her for five years now (ever since she was 4).

When we came back to the hospital, we made Kaliya wait outside the room to make him think that she didn't come. Me and my mom went inside and saw Sou lying there looking very exhausted and again receiving a unit of blood. Every time we asked him something he would just say, "uhm". Okay, what does "uhm" mean? Him and the noise "uhm" go waaaay back. Well, after a few minutes of stepping inside the room, we kinda forgot that she was still outside waiting for our cue. I went outside and she was still rubbing hand sanitizer all over her hands.

"Go inside." I told her. When she stepped into the room, Sou snapped out of his phase and smiled.

"Hi Kaliya."

"Hi Sou." she smiled back. She took a few steps towards him while eyeing his arm which had the PICC line in it.

"See Kaliya, Sou's really sick," my mom told her. She didn't say anything and just looked at Sou with a softened expression. Then Sou pointed at a tiny, black teddy bear the cancer center at Providence had given him.

"Kaliya, look. That's for you." he told her. I grabbed the bear and handed it to her.

"What are you gonna name it?"

"Beary," she said. It told her that "Beary" is too easy. She named her cat Ella from "Ella Enchanted". She once had two hermit crabs who she named "Hailey" and "Bailey". Hailey was originally named "Spongebob Square Pants Jill Sullivan" after her. Her name is Kaliya Jill Sullivan.

A few minutes after Kaliya and my mom left, Sou began to fall asleep. I decided to let him get some rest and headed out to the lounge to get some of these blogs done. After an hour of blogging I went to check on Sou. He was lying in his bed awake and tired. The nurse had been in there to check on his vitals again. He said his chemo was going to start at 10p.m. I decided to wait for that. The nurse came in and did an EKG for a baseline before they started treatment. Soon as she rolled in the EKG cart, Sou began eyeing the cart.

"It won't hurt," I said. The nurse laughed. Afterwards, she returned with another nurse who was carrying an IV bag and some other packaging. His nurse walked over to Sou and spelled out his first and last name to verify with the other nurse. Then she handed her the medications and left. His nurse put on this gown and explained that it was his chemo and it was to reduce exposure to the toxic drugs. She opened the packaging and dumps several pills into a cup. She handed it to Sou and told him that it was his All-trans and a Zofran. He took the cup full of meds and a full cup of water. Then she set up his IV bag of the Arsenic Trioxide. Sou asked her, "Am I gonna be sick?"

"Not necessarily. It varies from person to person, but with this medication, it doesn't happen a lot. If you do start feeling nauseated, let me know and I can give you something for that," she explained. I planned on finishing up this blog out in the lounge. Before I left the room again I made sure he had ice and water and was comfortable. I told him to call me on the cell if he needed me and to call the nurse if he needed the nurse. I turned off the light and shut the door to help his chances of getting some rest. So I plan on keeping daily entries on his status and daily experiences. Please check back often for the latest=)

Wednesday, January 14

2009-01-15T21:49:00.000-08:00

I woke up at about 6:30a.m. to wierd noises Sou was making in the shower.

"WHOOP....WHEWWW!!!....AAAAHHGGGA" he yelled. I also heard splashing. What the heck? He came out in his boxers and hopped on the bed with his hair all wet. He looked at me and said, "MAN that shit worked. My fever feels better. All that blood, got energy now!" he said as he laid back down in bed. Since he was all powered up, there was no use in trying to go back to bed. I started packing up our things and headed down to the cafeteria for some breakfast.

After breakfast, the flight nurses who would be on the jet with us came by. One of them grabbed our bags and headed to the airport. The other nurse stayed to get records and to ride in the ambulance with us. I asked, "So, is there a bathroom on the plane?"

"No. It's real small. Your knees will be touching his bed," she said.

"Well, he's been having diarrhea because of the anti-biotics. So......"

"We'd use a bed pan" she responded. Without thinking, I made this disgusted face. I know for a fact that bed pans are not 100% effective in doing what they are supposed to do. And to have a used bed pan spill in a tiny aircraft. That would not be cool=(.

The flight turned out to be fine. It was a smooth flight with little turbulence. No, Sou did not need to go to the bathroom on the flight either. When we landed in Seattle, they had an ambulance already waiting. I got to ride in the front seat on the way to the hospital. I caught a glimpse of the city and figured that I'd just get lost if I attempted to drive. Although, it was exciting to see a "real city". We arrived at UW and the paramedics assured us that they knew exactly where we needed to go. They unloaded Sou and all of us (the 2 flight nurses, 2 medics and I) headed down a winding hall to an elevator. We went up to the 7th floor and approached the desk. Everyone was looking at us like we were from another planet. They didn't know who we were or what we were talking about. We were at "7 North". We needed to be at "7 Northeast". WTF. So back down the elevator we went and down that winding hall. Everyone who saw us gave us this wierd look. Not a very friendly vibe.

"That's UW for you" one of the medics said. Through a series of elevators and hallways we finally made it to "7 Northeast".

"Oh, we've been expecting you!" the front desk said. Thank God. Exhausted from the flight and dizzy from their turbo elevators, we were finally escorted to his room. They unloaded Sou and I began to put things away and get settled in.

Not too long after, a female MD came into the room and explained that they were still reviewing his records and that his plan for treatment was still not completed. She also informed us that the results from the lab regarding his bone marrow were back. It turns out that Sou had a sub-type of AML that has a very high cure-rate. That gave me a feeling of relief. Instead of the traditional chemo, he would be receiving two medications (one oral and one IV). After I asked a few more questions, the doc mentioned to Sou that an additional bone marrow sample could be put towards research. Right when Sou heard that, all that came out of his mouth was "NO". She continued to explain that she gives her patients Fentanyl and some other drug for pain and that it wouldn't be so bad. I remembered I read that Fentanyl is about 80 times stronger than morphine. Sou continued to say no. Before the doc left, she told him to think about it because it could benefit their research. But I knew Sou had made up his mind. He was traumatized. Sometime later in the day, an asian dude came by to draw blood. I asked how many tubes he needed. He just looked at me and said, "A lot."

"Well, what's a lot?" I asked.

"Thirteen tubes" he said with a partial grin. Isn't that insane? It wasn't even 24 hours since his blood transfusion and they were already taking the blood back. They also took him for another chest x-ray. After that, they let us sleep. They said the real action wouldn't start til the next day.

Tuesday, January 13

2009-01-15T21:47:00.000-08:00

All morning we hung out in Sou's room waiting for Dr. Liu to return with the results of his bone marrow. At one point, Sou told me to hand him the laptop. I watched as he typed in the address for google. Then he asked me how to spell leukemia. He asked me a couple of times before, "What's leukemia?" or "Isn't leukemia that thing where you loose all your hair?" I would say that I wasn't sure and try to change the subject. I didn't want him to stress out before even knowing what he actually had.

"L-E-U-K-E-M-I-A" I told him. I took a deep breath and saw the page of search results. On the side of the page he spotted the word "cancer" among the links.

"It's cancer?" he asked. I looked closer at the page pretending to read the words.

"I guess so. But don't worry. We don't even know the results yet."

Doctor Liu came by at about noon, just about five minutes after Sou's lunch arrived. After the "Hi, how are you"'s, he got straight to the point.

"Basically, your tests came back and you have what we call Acute Myeloid Leukemia. Even though I had a feeling that that was the case, I was kinda hoping that it would be something else. He also told us that the lab was still working on finding out what sub-type of AML he had and that would determine the type of treatment he would be receiving.

"I'm going to make some phone calls and try to get you on a flight down to Seattle, possibly tomorrow. You guys can expect to be there for at least a month." Dr. Liu told us. After he had left the room, I looked at Sou and saw his eyes water up.

"Am I gonna die? I don't wanna die."

"No, it's gonna be okay. We'll go to Seattle because they have a better facility there" I told him.

I made the first phone call out to my mom, which was the first of many I had made that day. I remember calling Elsie, Auntie Chit, Irelynn, Michelle, Gramma Jean, Nang, Maria, Kristina and Dawne. There was probably more people. Sou focused on contacting his family and close friends.

A few hours later, a nurse came by and said that I should be prepared to leave at any moment. The doc had found a provider to accept Sou as a patient at the University of Washington Medical Center. They even had a bed ready for him. All they needed to do was have his flight set up. I began to panic because I had the impression that his flight would be the next day. I still had so many things to do before I left town for a month. I needed to pack, make arrangements for my cat, find someone to check my mail, make sure Sou's insurance premium was paid to Brown Jug before leaving, write out checks for rent and my Scion and let my apartment manager know that I was leaving for a month. Of course, I figured everything out. But being the person that I am, I tend to "freak out" when overwhelmed.

I got my cousin Irelynn and MIchelle to help manage the cat and the apartment while being gone and to drop off a couple checks around town so the bills would get paid. Once back at the hospital, I noticed that Sou's dinner hadn't arrived yet. It was about 6:30pm. He mentioned that he would be receiving blood that night and they probably didn't want him to eat. I thought nothing of it until he complained of being hungry two hours later. I made my way through the halls in search of his nurse. Every time I came upon a nurse, they were like, "Oh check with his nurse." So I hunted the chic down.

"So, Sou didn't get his dinner tonight. Is that because he's getting a transfusion tonight?"

"Uh, I don't think food would be a problem. Let me call down stairs," she said. She later returned to the room with a tray of food.

"Sorry about that, here's some dinner," she said. I looked down at the tray and there was a big sub sandwich full of veggies and a bunch of fruit. It looked very yummy. Then I looked at the nurse.

"Isn't he not supposed to have any fresh fruits or vegetables?" I asked.

"OOOOh really?....Oh right! He's on that neutropenic diet? I'll be right back." Then she left with the food.

Another nurse came by and said, "Eight o'clock tomorrow morning, be ready." Throughout the night Sou had multiple visitor's stop by to wish him luck and to give their blessings. Michelle, David, Irelynn, Xenophon, Pao, Cody and Thon stopped by, some getting lost on the way to the room and some forgetting that they said they'd bring nail clippers. I think having visitors boosted his mood, which was great.

Occasionally, Sou would ask me to take his temperature. After three hours of receiving a dose of Tylenol, his fever was at 104.2. His nurse gave him ice packs to help and a pain pill to help with the wonderful headache that came with the fever. He also received two units of type A blood. It kinda helped his fever, but not really.

Monday, January 12

2009-01-14T21:07:00.000-08:00

We woke up at around 6a.m. because they were taking his vital signs. Nothing was going on and there was nothing to do so we ended up falling asleep. I planned on waking up before 9a.m. because that was when Dr. Liu was supposed to do the biopsy. I woke up at 9:30a.m. Sou was already working on his breakfast. I figured that it wouldn't be all that bad. After all, Dr. Liu did say he would numb the area. A little before 10a.m. the doc showed up with a tool box full of goodies. He opened it and began setting up for the procedure. Big needles and small, tubes here and syringes there. This was gonna be fun=)

He had Sou lie on his stomach. He started feeling around Sou's lower back, just above the hip. Then he took his pen and pressed it onto Sou's skin to make an indentation. Next, he cleaned the area with some iodine swabs and laid a sterile drape over the area. Then he began numbing the area with lidocaine.

"It's gonna burn a little" Dr. Liu said. Then began moaning softly. It looked like he was using a 25G needle. Then he said that he would go deeper to numb the tissue even further. This time around, the needle looked like a 20G. And deeper he went, and Sou's moans became slightly louder. Then I was thinking, "Gee, I could handle this, this ain't so bad." I've witnessed a couple procedures at work and they usually moaned. Before the syringe of lidocaine was empty, the doc began poking at the bone saying, "Can you feel that??"

"HUh??? huh???" Sou was confused.

"Good." the doc said. Then Dr. Liu made a tiny incision with a scapel that went down to the bone so it would be easier for the "bigger needle" to go in. He reached for this long, metal, probe-looking thing that had a plastic grip on the end. Apparently the doc referred to this as the "bigger needle". He inserted it into the incision until it was resting on the surface of Sou's hip bone.

"Okay, you're gonna feel some pressure." Dr. Liu said. Then he began doing a cork screwing motion. This is where the louder moans began. Sou also began tapping the back of his hand against the bed signaling me to hold his hand. After a few seconds, Dr. Liu removed piece from the center of the "big needle" and reached for a syringe. He placed it on the top of needle and said once again, "Okay, you're gonna feel some more pressure." Right when he aspirated the bone marrow Sou began yelling, very loudly. That part was over after a few more seconds. The whole time Dr. Liu was calm and more interested in the specimen he obtained than the yelling a moaning by Sou. I thought I was about to faint.

"I'm gonna go get some water." I said.

"NOOO Stay here!" Sou said. In my head, I was like, DAMMIT. This was a little more intense than the regular suturing that went on at First Care.

After putting the bone marrow in a couple of lab tubes, Dr. Liu positioned the big needle in the incision onto the surface of the bone.

"Okay, this is gonna hurt a little bit more. We're going to get a piece of bone." Right when he said that I thought about just walking out the door. But there I stood. I didnt' need to watch, but I couldn't help myself. He began doing the same cork-screwing motion just with more effort this time. Sou's loud yelling turned into screaming. The whole time the doc remained calm and continued to go deeper into his hip bone. After what seemed to be an hour of screams (probably 10 secs), Dr. Liu removed the whole thing.

"Are we done yet?" asked Sou.

"We'll see." He removed the piece of bone that looks a little bit shorter than a toothpick.

"You wanna see what we got? I'll show you." he said to Sou.

"NO" he pouted. Yes it looked very painful. I don't think I wanna watch one of those again. Maybe on YouTube. Not anything live. For the next few days, Sou would continue to talk about this procedure, claiming he is traumatized. I would be.

Nothing went on during that day once the procedure was over. I think they drew a couple more tubes of blood. Elsie and Edna stopped by to visit Sou. He enjoyed that. They were his first visitors. It seemed to have elevate his mood quite a bit. Basically we would wait til the next day for the results of the bone marrow which would be sent out to a lab in Seattle.

Sunday, January 11

2009-01-14T20:31:00.000-08:00

Ever since Wednesday night, Sou was had a fever. He tried Tylenol, Motrin, Nyquil, etc and still wasn't feeling better. By Sunday morning, he still had a fever and decided to go to the clinic I work at. We thought he'd just be seen and then we could get a bite to eat after. At the time, he was also having belly pain. To rule out appendicitis, they drew his blood. Just about all his counts were low. Then it was off to the emergency room.

When we arrived, they took his vital signs and got him into a room right away. After a brief chit chat with the doc, he order a bunch of blood tests to confirm the CBC from First Care, urine stuff, a CAT scan with a barium enema (not fun lol), a chest x-ray and IV fluids. The first thing they took care of was the CAT scan.

They unlocked his bed brakes and began rolling him down the hall towards CAT scan. The tech that was taking him mentioned the barium enema part. I didn't think much of it cause I assumed they would have a bathroom nearby! But that wasn't the case=) They made me wait outside in a chair. Five minutes later, the same tech started rolling him down the hall, back towards his room. On the way there, Sou was like, "Gotta go bathroom." As they rolled him into his room, all the tech said was, "Okay, go left, then right, kay?" Then he left. Bastard. So Sou hops out of bed and starts saying, "Gotta GO! GOTTA GO!"

"Well GO THEN!" I told him.

"AHHH HELP!!!!!!" His IV was tangled with the bedrail!!!!

"NURSE...HELP!!!" The people at the nurses station just looked at me and said, "What do you need?" I look at Sou and he's going in circles.

"AHH It's dripping!!!!!!!" Finally he just unscrewed it loose and some dude escorted him to the bathroom. Yes it didn't seem all that funny at the time. But I have no idea why they didn't just take him to the bathroom or have a bathroom nearby.

Next was a series of blood draws and the urine sample. That went surprisingly well being that Sou's not a needle person. It took a lot just for him to get a flu shot this year. After all the tests were reviewed by the doc, he came in and told us that Sou would be spending the night there. An hour later, a hematologist came by and said that he would be needing to take some bone marrow and a piece of bone the next morning. After all the needle sticks, Sou asked, "Is it gonna hurt?"

"Is it gonna hurt me? No." he joked. With that being said, I knew it wasn't gonna be fun. But I didn't say anything. Before that doc had left, he said that blood counts could be low due to a virus, aplastic anemia, or leukemia. With the bone marrow, we would be able to tell what Sou had.

For the next two hours we waited for someone to bring us up to his room. He was put on the oncology floor. The room had a nice view and he had his own bathroom, which was nice. The nurse informed us that he would be isolated and wasn't allowed to leave his room because of his white blood cell count. They said it was almost non-existent. Because of this, every nurse that came in had a gown and mask. No children were allowed to visit. No one that had any sign of illness was not allowed either. Even plants and flowers were off limits. The rest of the night we just hung out. I curled up on a chair and fell asleep. I wasn't looking forward to watching a spinal tap and thought a couple times about how I could not be present. Then I remembered that Sou had nobody else, no one else in town at least.