Wednesday, January 5, 2011

Stem Cell Removal 1/4-5

    It's Wednesday and I've been to the hospital every day this week, with plans to go again tomorrow.  I look forward to the day I see that place in the rearview mirror for good!
    Monday was a CBC- after packing a backpack full of things to do (just in case there was a repeat of the monster day of the last transfusion), I found out my hemoglobin was at 7.7 (not critical, I guess) and my white cells were up very high.  So I was clear to go home!  It was really nice to have a short appointment.   It was kind of funny though that all the nurses and doctors knew about my terrible experience on Thursday with the blood transfusion.  They were all apologetic and overly kind.  

   Tuesday was the scheduled stem-cell removal.  I had plans to be driven by Adam at 12:30, until I received a phone call asking me to go in as soon as possible for a chest x-ray to determine the placement of the catheter.  These appointments and last-minute changes are making it hard on my babysitters!  I made it in early for the x-ray, which made me late for the stem cell appointment.  It worked out though, I had to wait there for about 2 hours anyway!  The most frustrating part of this was that the nurse never even looked at the x-ray! I was 1/2 way through the collection when the nurse asked me why I needed the x-ray.  She said I didn't need it because she could look at the surgical notes to see the catheter was in the right place.  I guess the x-ray was just to throw in an extra expense for my insurance to cover. 

    The actual extraction of stem-cells is amazing.  Over the course of 4 hours the machine (in the pic) runs my entire body's volume of blood through it 3 times!  The blood goes out of one tube of the catheter, into the machine where it is "washed," the stem cells are extracted (by weight), and sent into a little collection bag hanging above me.  The rest of the blood is turned to my body through the second tube in my chest.  By the end I was a little tired and bored after sitting in a chair for a few hours, but that's about it!  

    I was told to come back in the morning to see if I needed blood (sometimes the machine lowers hemoglobin counts) and if I didn't then I could go directly on the machine again.   I would find out then if I had reached the collection goal of 5 million cells.  Either way, I'd have to do day 2 of potential 5 just to make sure there was a back-up bag. 

   This morning I arrived and waited only 20 minutes before finding out my hemoglobin was fine (7.9) and not only had I reached my goal of 5, but had doubled it with 10 million cells!  Yay!  I was so excited not to have to come in for 5 days in a row!  I was also told my white blood cells were up to 100, 000- nurses kept asking me if I was in pain!  The Neupogen shots do cause a lot of bone pain but it's been gone for me during the past two days.  Maybe my body gets used to it after a while?  I still had to be hooked up for collection today for the back-up, but it wasn't too bad.   

   I go in again in the morning to see if my hemoglobin is high enough not to get blood (it dropped again by the end of collection to 6.3).  Afterward, I am hoping to be free of doctor's visits until Monday morning when I go in for another CBC and to find out when I have the next chemo session, which will likely start next Wednesday.  If all goes well I could be out on the 14th to recoup for 2 weeks with bi-weekly appointments for blood counts.  During the second week I'll be scheduled another PET/CT scan for re-staging of the disease.  Assuming the tests show I'm in remission, I'll go in for the long stem cell transplant around the 28-31st of January.  Best case scenario: over with treatment around Valentine's Day!  Then of course I have to deal with recovery... but I can DO that!  I just want to hear the word "Remission!"  
This pic's just for the fun of it! :)

Tuesday, January 4, 2011

Blood Transfusion 12/30

Christmas Day at the church house
     I did make it out of the hospital on Christmas day, a little after noon.  We had skipped the Christmas activities, due to my being in the hospital, but still wanted to do something nice on Christmas day.  We decided to attend a dinner that our Bishop and his wife put on every year at the church house for families away from "home."  I was a little worried about how I'd be feeling but Adam told me just to sit at a table and let him take care of feeding me and keeping an eye on Mykelle and Evan.  I do like being taken care of, so we went!  It turned out to be a very nice time; lots of great company and the food was wonderful, and there was plenty of it.  After three days of eating nothing but hospital protein shakes, I was able to pig out on turkey, mashed potatoes and gravy, and delicious homemade wheat rolls (thanks Hazel!).   I'm sure I wasn't the life of the party, but it was nice to be with friends on such a special day.  The kids had a great time running around the gym with all of the other kids, and eating off of random plates found lying around.

    We ended up doing the Christmas Eve/morning routine on Monday night and Tuesday morning.  The kids had no idea we had postponed it.  We had an enjoyable Christmas Eve filled with gingerbread cookies, eggnog, and stories of our Savior's birth.  Tuesday morning was a little crazier as we opened presents and the kids wanted to play with the already opened toys instead of opening the rest of their presents.  We finally finished after a couple hours and several breaks.  It was nice to feel well for the day and enjoy the kid's excitement. 

     Since last I wrote, I've had a couple updates on the cancer front.  I had two appointments this week, Monday the 27th and Thursday the 29th.  On Monday I went in for a CBC and as a follow up after the chemo.  It was mostly uneventful except that I found out for sure that I'll be getting another session of ICE after the stem-cell removal (which is this week Tuesday-Friday.  It was expected, since the cancer is not yet in full remission.  The best part of this news to me, meant that my parents could come out to visit before the stem-cell transplant!  They had been planning on coming near the end of the transplant, but the docs recommended people who've recently flown to stay away from me at that point- since my immune system will be at its lowest.  They will be out here on the 14th, and will stay until the 22nd.  We are so excited!  Mykelle prays every night (and nap time too!) that her Grandma Roxie and Papa Mike be blessed to make it to her house.  So sweet!

    Thursday's appointment was scheduled for 10:40 in the new John Theurer Cancer Center- it's separate from the hospital now, but just across the street.  Because they are in the new building everything was very chaotic.  I did finally get in to see the doctor after 1 1/2 hours wait just for him to say, "You need a transfusion.  See you next week."  Yeah... not a big fan of how little time, effort, or care these doctors present their patients.  So I was sent to the treatment room to get a blood transfusion.  I'd never had one before, so I asked a lot of questions.  The nurse told me I needed two units of blood because my hemoglobin was at a critically low level of 6.4 (normal is 12-16).  She said she was surprised I was doing so well, that it's low enough to make one dizzy and pass out.  I told her I did have a throbbing headache, and she said it was because of the low levels of oxygen I was getting to my brain.  The heart starts pumping harder to make up for it, hence the throbbing headache!  

  Up to this point I had been content with the explanation, and was ready to stay for a couple of hours.  I was told the blood would be ready at 2, and finished by 6.   Well, that was a problem.  Mykelle's Joy School Christmas Pageant was scheduled to begin at 6:30!  And I still had to pick up a couple things at the store and then pick up my family before heading over.  When I said I couldn't stay for two units, the nurse got the doctor's ok to only give me one, but on the condition that I swear to go to the ER if I feel like fainting over the holiday weekend.  I was pacified.  

    UNTIL... 3 o'clock rolls around, and there's still no blood... 4 o'clock rolls around- no blood... At 4:25 I packed my bag and told the nurse I'd be leaving unless the blood could be started in the next five minutes (getting me out of there at 6).  Since that wasn't possible, I asked what they recommend I do after Mykelle's pageant.  I was told not to leave, by several nurses and two doctors, but if I DID leave, I'd have to come back to the ER to get the transfusion either in the middle of the night or in the morning.  I think I must have panicked the nurses because they were suddenly on the phone yelling at the blood bank (apparently there were *several* mixups with my order).  One nurse jumped up and asked me if she ran to pick it up and had it here within 10 minutes, would I stay.   I was surprised at her willingness to put herself out like that!  Of course I said I'd stay, and she was back, sweating like crazy, in about 15 minutes and I had the blood started a little after 5.  Really late, but thankfully the Joy School group had agreed to postpone until 7 so that I could be there.    The nurses kept telling me that I was too nice, that if they'd been in my position they'd be angry!  But  I had to remind them- they were not the ones at fault!  Had they been, I might not have been showing such a pleasant side :)

    I felt surprisingly well after the one unit of blood and am looking forward to the two I should receive tomorrow.  Just not looking forward to the long waits!