Swim

Treading water again. Today was one hell of a day. When people ask Nick or I this question, "Where were you when Barack Obama became the 44th President of the United States?" we will be able to answer, "we were at the Sidney Kimmel Comprehensive Cancer Center." So let me give everyone the run day of our day...
7:30AM I get up...yes, that is very scary and I felt very tired.
8:00AM Call clinic to find out time for LP. I am told we are supposed to be there at 8AM. I respond, "Uh...well that ain't happening since we have not even left our house yet. "And the LP?" I ask. That is scheduled for 11:30AM and there is no blood work to be drawn.
WHAT??? I incredulously query. That is not possible. He has to have blood work.
Meanwhile, Nick has gotten up and gone into BR.
8:30AM Nick is still in BR. I decide to call back to clinic and find out why there is no blood work scheduled to be drawn. They tell me that was an error and Nick will have labs drawn. "When will you be here?" "Um...as soon as I can get Nick out of the BR...30-45 minutes!" I go back upstairs, Nick has gotten back into bed and does not want to get up.
8:45AM I finally cajole Nick out of bed and tell him we have to go.
9:00AM In the car, driving to the Hop. Nick is quiet and not feeling well. The trusty upchuck bucket in the back seat, just in case.
9:40AM Arrive at the Hop, Nick goes into the Weinberg Center while I park. He checks in and the friendly kiosk spits out his appointment paper....it reads as follows:
8AM Meet with Margaret RN
10AM Lab draw
11:30AM LP with IT Chemo
Why would we want to meet with Margaret (whose is not even there today, she is at the inauguration and we have nurse Kim instead) at 8AM...two hours before labs???? Oh my God.
And now back to the timeline:
9:45AM Sit & wait to be called for labs. 10:00AM Still waiting 10:15AM Still waiting
10:30AM WE ARE ALL STILL SITTING and WAITING...everyone is trained to watch the unoccupied reception area. Every so often the door opens and a tech come out, prints out a list of those who have swiped in and then the tech comes out and starts to call people back. We are all like Pavlov's dogs waiting, listening, anticipating....when the door opens we all start rustling in our seats, ready to take off for the lab draw area. The silent cries of "call me please!" are deafening.
Nick's name is called....thank you Jesus, we have won the lottery. This phase of waiting is finally over. Nick goes back to have his blood work done. I remind him to make sure they are drawing all the right labs, which he does. While I wait I strike up conversation with a nice couple in their sixties, husband and wife team. He has lymphoma and he has been battling this disease for twenty years. It keeps coming back! But, he keeps fighting, he keeps swimming just like the Golden in the picture.
10:40AM Nick resurfaces from the depths of the lab draw pool. The white paper in his hand brings the first bit of data - VS & weight. No fever this morning! Yeah.
Background Info: Nick had a low grade fever of 38C last night which equals 100.6F. He was feeling generally punky last night as well and had a bloody nose, vomited x i and "the look" was in evidence. I called the on-call doctor who urged us to watch & wait and call back later for any new developments or continued fever)
BP slightly low 100's/54. WEIGHT = 140 lbs. down again from last week's 143 lbs.
10:45AM Head upstairs to second floor. Find Nurse Kim, Nick wants to lie down as he does not feel well. Request pre-meds for LP. Nurse Kim tells us we have to wait for platlet results to come back. (I asked Dr. Frosty about this last week.) Nurse Kim drops small bomb that Nick might have to get admitted??? Wait, wait, watch Obama, wait, wait.
11:00AM Wait. Watch the man across the way argue with his nurse about why he needs to go get some food before he passes out. Watch him get up, put on his coat and leave. (Inside I am smiling and saying to myself.."You go rebel man!")
11:30AM Scheduled time for LP. Wait some more. Listen to the patient in the next cubicle moan in pain. He only speaks Russian, his caregiver translates. Watch them send him home and listen as they tell him to get some Tylenol. Platlet results come back, they are way down @ 67K. But, they are high enough for LP procedure to be done. The low platelet count also explains the nose bleed. Hmmm....trouble, trouble. Keep treading.
12:00PM Still waiting. Man next store is back. He has his food and he is now ready. Nurse is upset. (I secretly applaud his ability to swim against the tide!)
12:30PM Finally Kathy NP comes to find us and takes Nick back for LP. She is worth the wait.
She get the LP in one stick and she does a wonderful job! This lady also did Nick's first bone marrow. We jog her memory and she tells us about the 22 year old young lady who had first BMB on December 23rd, also just diagnosed with leukemia. Kathy NP states she has done so many "first timers" and she gets smutney. She is having a rough day. She is so overworked today....day after the closed holiday. Have to make up for lost time. Nick & I really like Kathy NP, we will request her in the future.
12:45PM Nick begins his two hours of lying flat. More waiting. He is still tired and not very hungry. Dr. Frosty appears and give Nick the news. His labs are back and his counts are way down!!!! His WBC = 1,080 ANC - 420!!! Hct. 29. This is very disconcerting to me, but, this is not a surprise as I had suspected something was wrong. I figured his counts were down, but, not that much. Nick has once again dipped into the scary neutropenic zone! Dr. Frosty is concerned that the new Gleevac medicine is doing this to Nick. He wants Nick in hospital so we can watch and adjust dosing. Also he is worried about the fever he had last night and wants to watch Nick and do some tests. Nick takes it all in stride. He is not happy about these latest developments and we are both a little worried, but, hoping it will all work out. So far today, no fever!!
2:00PM Waiting. IV started in Nick's arm. HOLD DASATINIB DOSE!!
4:00PM Waiting. Fluid bolus started. Blood cultures drawn.
6:00PM Waiting. Nurse lets us know she hasn't forgotten us. They are waiting too, for a bed to be ready on the floor. Kate comes to see Nick and hang out. Yeah Kate!
7:20PM FINALLY Nick has a room on 5A and we walk ourselves up there. Glenn has arrived just in time to walk up with us to the room with all Nick's stuff from home in tow.
8:00PM Admitted to floor...paperwork, ID bands, weight & VS (again), EKG, IVF's, fill out the
"crazy" assessment. (Tell you about that one another day) organize Nick's stuff, turn on TV, try to get a menu for tomorrow so he can get trays.
9:00PM Waiting to meet with the resident, she takes a history from Nick and does a physical exam. We eat dinner...Matthew's pizza, delicious. Nick actually seems to feel a little better. Could skipping a dose of the Dasatinib work that quickly?? This is the only thing that is different today. We shall see...it will be held for tonight's dose as well.
9:30PM Nurse Julie comes in with meds. There is some confusion about plan. She will page doctor to come back and talk to us and clarify.
10:00PM Still waiting. Nick is tired and wants to go to bed.
10:30PM Finally resident comes back and we get everything straightened out.
11:15PM Glenn & I say goodnight and head for home, both of us are exhausted! Are you??
11:45PM Arrive home...stay up too late. Go to bed and start all over again. In the words of my
buddy Suspect - swish, rinse & repeat.

So did you all get tired of waiting for the point of this story? I hope this gives everyone just an inkling into what our day was like today. Yes, Nick is back in the hospital. This one is easier only because I was expecting it and I at least think I know what is going on. I don't really think he has any kind of big infection. Or at least I pray to God he does not. They wanted to start him on the standard IV antibiotics tonight, but Nick said he wanted to wait and see if actually has another fever. The doctors were ok with this because they were on the fence about starting the antibiotics also. Hopefully, he will remain fever free throughout the night. Nick will have a chest CT to follow up on his cough and the pneumonia he had diagnosed on his last admission. His labs were repeated tonight and I think I will have a better idea of the plan after tomorrow's rounds. The main concern right now are the low counts which have undoubtedly been caused by the Dasatinib. Now we have to wait until his counts rebound and then make a new plan on the Dasatinib dosing. The biggest worry would be if he cannot tolerate the side effects of this med, which he needs. The initial turn around in his presentation was pretty amazing, so that worries me because it shows how much it was affecting him. This medication does have a lot of side effects.

Now last but not least...what is with all the swimming talk. Well this song "Swim" was written by a guy named Andrew McMahon. He used to sing for a band called Something Corporate and now he has a group called Jack's Mannequin. He was diagnosed with leukemia in May 2005 and had his BMT in August 2005! He wrote an album since he was sick and I know his music has been influenced by his experiences going through this process. This song "Swim" I just love! It is a wonderful song and very inspiring to me! It is hard...but, as Andrew writes, "just keep your head above....SWIM!!!" I hope everyone really listens to the words and stays in the fight. I know Nick will and I know all of us are right there with him.