April 23, 2012

Since writing the post "Hope - Reprised," I have received many notes and phone calls of concern.  I think somehow the true message of that post was lost in the deep emotions expressed.  I do have hope -- lots of it.  The grieving mother and our former roommate have hope, too.  That was my point. But possessing hope does not leave one emotionless or unable to feel anguish or pain.  Instead, it allows one to cling to God even through the depths of anguish and pain. I also have peace, even though I do not know what the future holds.  I know my family and I are in the hands of a God who cares for us intimately and has promised to be with us ALWAYS.  He lovingly provided opportunities to grow my faith and hope in Him long before we embarked on this latest journey with leukemia.  I already had clear evidence for myself that God provides for my family no matter what the devil throws at us.  This latest journey, though more difficult than I ever imagined, has only strengthened that conviction.  No one knows what the future holds, but it is easy to ignore that fact when everything is "normal."  I have hope for you, my readers, that through my experiences, you will see the necessity of connecting with God, the Source of hope and peace, for yourself. 

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Derek is beginning his fourth week of Delayed Intensification (DI).  So far he has done pretty well, with the exception of one scare during the first week which I will explain later.  The chemo medications he has had do not drop the blood levels too severely.  One of the chemo meds (Doxo) usually causes hair loss, but with his third and last Doxo treatment last week, he still had not begun to lose any.  I was almost beginning to think he might keep his hair after all.  But a couple days ago, I began to notice a few hairs on his pillow.  Here we go again.  Today it is falling out by the handfuls.  I offered to cut it all off if it was driving him crazy, but he is reluctant to do that. Back in September, I had expected he would lose it all and that I would not be giving any haircuts for a long time.  But it fell out pretty evenly, so even though it was thin, he still had hair.  It grew longer over time and was quite fuzzy and almost curly, though remaining thin.  During Interim Maintenance more hair started to grow back.  On Easter I actually gave him haircut using scissors instead of a razor.  What a surprise!  But now he is losing it again. We will have to wait to see if he keeps any this time around as he did before.

Three weeks ago when he began DI, Derek started a steroid as part of his treatment.  It increased his appetite dramatically, as expected.  But on Thursday evening of that first week he started having breathing problems and was extremely lethargic and sleepy.  Friday morning he hardly wanted to get out of bed, and though eating well, he had absolutely no energy.  He complained of being cold and was still having problems breathing.  I put him in the car and called the clinic as soon as they opened and explained his symptoms.  They wanted to see him as soon as possible because steroids can mask fevers. The chills, lethargy, trouble breathing could all indicate an infection even without the presence of a fever.  Since we was already on way I told them I'd be there soon.

When we got to the clinic, Derek managed to walk in, but he almost seemed to wilt onto the chair in our curtained cubicle. They drew labs, put a monitor on his finger to watch pulse and oxygenation, and we waited.  His face was very flushed, and he wanted a blanket to keep warm.  Then his breathing became very labored and his nostrils were even flaring as though he was really struggling to get a breath.  The pulse-ox indicated his oxygen level was within normal limits, but they decided to put an oxygen mask on him anyway.  It did seem to help, and after being on it for half an hour he perked up and wanted to play a little.  His labs came back almost identical to Monday's labs, so nothing was unusual.  They were still worried about a masked infection and started him on antibiotics while arranging to admit him for further testing at the hospital. So about 4:00 we headed to the hospital.  He even got a private room but also had to have vitals every two hours.

That night when he went to sleep, his heart rate slowed, which is typical.  It is not unusual for his sleeping heart rate to dip into the lower 50's.  But this time it kept getting down into the lower 40's which would set off the alarm on his monitor.  Around midnight, the nurse came running in to turn off the alarm and check on him.  His heart rate had dropped momentarily to 35.  She was really worried and woke him up to make sure he was OK.  Then she ordered an EKG.  Around 2:30 a.m. they came in to do that, waking him up again while they attached the stickers all over his torso.  The EKG showed everything was normal, just slow.  At 4 a.m. the nurse came in again to draw labs, waking him yet again.  After a night like that, he was understandably cranky and tired.  He was still having labored breathing, but again his oxygen levels were fine.

The nurse practitioner came in mid-morning to examine him.  She and the others were all scratching their heads trying to figure out what was going on with him.  Every test was coming back normal.

Our church brought over a lovely meal for us from their potluck, and while I was downstairs eating with Kristen and my aunt, Vince came down and said the oncologist had just done rounds and thought Derek's breathing problem was just a side effect of the steroid he is on. He had released him to go home because there was nothing life-threatening, and there were no other indications of infection.  I raced upstairs to talk to him.  He told me that this steroid is known to slow the heart rate which caused his lethargy and the chilling. The couple of pounds he had gained that week were causing the breathing issues.  He felt safe to send him home and check in with the clinic again on Monday.  We were so relieved and thankful that he was alright.  So only 25 hours after walking into the hospital, we walked out again; the shortest hospital stay for Derek yet.

As of last night, Derek is finished with the steroid.  He has been quite tired still, often taking two naps a day.  His appetite has been very good, and he has gained back the weight he had lost. This week he will get no chemo, but next week we will be at the clinic five days in a row for chemo.

Monday, April 2, 2012 - Phase 4 Started

This morning, Derek and I headed to the clinic early.  If his labs met minimum levels, he was slated to begin Phase 4 called "Delayed Intensification" (DI).  Yes, the name aptly describes it.  It will be intense.  It will be like Phases 1 and 2 combined.  He was scheduled for a lumbar puncture with sedation and intrathecal chemo, an echo cardiogram, two more IV chemo meds and an oral one I had to pick up later and administer at home.  Because of the scheduled sedation, Derek couldn't eat or drink anything beforehand.  The clinic was extremely busy and he didn't actually get drawn until around 10 a.m.  Starving hungry, he then had to wait until the results came back.  Finally, by 11:00, we received the all-clear.  By noon, they had him in the procedure room preparing for the lumbar puncture.  He did really well, but I had to push him a little to wake up in time to get over to the hospital for the echo cardiogram at 2:00.  He ate "breakfast" in the car on the 10 minute drive to the hospital.  The echo went fine, and he dozed through part of it. At 4:00 we headed back at the clinic to wait for the results. He ate lunch on the way back to the clinic.  The echo came back normal, and by 5:00 they gave him his last two chemo meds.  Finally, little after 6:00 p.m we walked out of the clinic.  Another marathon nine-and-a-half-hour day.

Derek will have weekly clinic visits with chemo for the next several weeks and oral meds to take at home.  It is likely to drop his counts very low and keep them there for a while.  Keeping him well will be the biggest challenge.  DI here we come.