Friday, January 8, 2010

Labs are not just dogs

Wednesday is chemo day. Papa gets chemo every Wednesday for three weeks and the fourth week is lab work. When we arrive at chemo the first thing they do is weigh him to make sure he isn't losing too much weight. Then they take his blood pressure and temperature and then draw blood for lab work.

A glitch in any one of these can cancel or postpone a chemo treatment. I don't know how you would feel about yourself, but I want Papa to have every treatment, on the schedule originally set by the oncologist. I want to get this stuff into him as quickly as possible to ensure recovery as soon as possible.

We encountered glitches as soon as he began this three week on, one week off schedule. During the time he got chemo and radiation together there was no problem. That was because the chemo drug was at a half strength dosage. The drug Papa is given is called Gemzar. It is the first line chemo agent for pancreatic cancer and is also used for ovarian cancer, certain lung cancers and others. We were told that it is less toxic to many patients than other chemo agents but it does cause Papa severe nausea (they give him meds for this that help enormously). He has not had any hair loss but we tease him and tell him we really wouldn't know the difference anyway because he is so bald.

When they do the blood tests they are primarily looking for changes in WBC's... white blood cells, platelets and RBC's... red blood cells. A decrease in WBC's can leave a patient at risk for any infection that comes down the pike. Low platelets leave a person at risk for excessive bleeding (Papa is on Coumadin and Plavix too and that increases the risk even more) and low RBC's would leave him anemic. Before the first chemo out of three (1/3) he is ok but when it comes to 2/3 his WBC's are coming down and by 3/3 they are looking at him and taking his temp and asking "are you sure you feel ok?" We have a seven year old child living with us and a toddler... two age groups known for frequent infections, colds, flus etc. Then there is the H1N1 and this is seasonal flu season to boot. We wash hands obsessively in this house and are considering taking stock in Purell.

This pattern of increasingly low white blood cells showed it self by the second cycle of chemo. The doctor reduced the amount of the drug, hoping to head off the low WBC's for the next cycle but it did not work. Then a couple weeks before Thanksgiving they had to skip one session because they were so low and they gave him Neupogen. Neupogen is a drug to build up the WBC's... it is given as a sub q injection, just under the skin, like how insulin is given. This really helped but the next session was the same thing... low WBC's. I asked the nurse, couldn't I give him the Neupogen here at home after every session as a preventative measure? Why wait till they go low and possibly have to skip a session or reduce the Gemzar dosage again? So that is what we are doing... chemo on Wednesday, Neupogen on Friday, Saturday and Sunday then repeat 2x more... fourth week lab work.

Can you believe that Papa balks every fourth week when we have to go for the lab work? He knows it is essential to know these values but he hates going so much, more than going for chemo. I always have to insist that he go cause left up to him, he wouldn't.

Another lab test they do is for tumor markers. Certain cancers show up in your blood as high levels of this or that chemical or enzyme etc. The tumor marker for pancreatic cancer is called CA19-9. The normal level for this marker is below 37. Before he had his surgery Papa's level was 242. The doctor told us he want's the level below 28. They check this CA19-9 about every four weeks. First Papa was at 33, then 37, then it crept up to 39 and this past Wednesday it was 42. One time I asked the doctor what it meant if it went up and he said that sometimes it does go up and down but what he does not want to see is a gradual increase that does not come back down. Well hell, that's what it's doing!

When the nurse told us the level this past Wednesday Papa asked if 42 was bad. I know it's not good... does he remember what the doctor said? I don't know. The nurse told him that unless it goes up five points... like from 39 to 44, she is not concerned. She indicated that 42 was not "that" high. But it's creeping up, slowly but surely. I want to speak to the doctor but there is no way I can do that without Papa knowing. Unless something happens we do not see the oncologist again till January 27th. So from now till then I will anxiously be watching for signs of jaundice or an increase in nausea or any of the other symptoms that might indicate that chemo is not working as well as we hoped it would. Again with the waiting!!

Last night we were in the living room and had finished family devotions. After reading the devotional we go around the room and each of us in turn thanks God for His many blessings, whatever they may be, and prays about the matters that concern him. We believe there is power in prayer and power in people praying together. One thing we always pray about is healing for those we know who may be ill... Laura's mom, Laurie's mom too, the wife of the man in the chat room, the lady that goes to Sara's shop, to name a few, and of course, especially Papa. After we were done I finally got up the nerve to ask Papa point blank how he felt about all this. Is he scared? Is he worried?

His first concern was for the babies. He is worried that if he dies they will not understand, that they will think Papa abandoned them, just left them and went away with no thought or care for them. Melanie said she could imagine Maeva wandering around the house, bewildered, calling for her beloved "Ming-o-ma." Mae-Mae adores her papa and considers him to be her own personal possession. Melanie assured Papa that Mae and Eli and Noelle (Ben and Sara's baby daughter), and the bigger kids too, will know just how much he loves them. He nodded... he knew we all would do that. Then he said he's a little scared, not of death itself and beyond, but of the process of getting there, of pain and disability, of the indignities of dying, of the pain it would cause those who care about him. It's the same answer I would have given about myself.

2 comments:

  1. Chris have you ever thought about video taping Mikes thoughts and what he would like to say to people? It might not be easy for him at first but you could do a taping in private and show him or do one together. Tape family gatherings like game night, devotions and birthdays so the video camera becomes a part of everyday life fixture. The kids will love to look back and see their family as it was. I do that with the few tapes I have of the Waxlers.

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  2. Kat, sorry it took me so long to reply. We are fortunate that our children are picture taking fools. Mel has over 300 photos on her cell phone alone. If we get to the point where we know the end will be coming before too long, I will suggest the video taping. Right now it's too early for that. But we do video family gatherings and camping trips.

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