Good News, Bad News

I went back to the doctor on Monday hoping for some answers to the latest set of side effects I was experiencing.  For several days, my joints had begun to ache to the point that I barely had the strength to get up and down.  It was the worst in my knees, then ankles and feet; but my shoulders and elbows hurt as well.  It was very discouraging.  I couldn’t imagine how it had gotten so bad so quickly.

I described the pain to the PA who seemed a bit at a loss, but as soon as Dr. Shah came in, she seemed to know just what it was. The T-Cells are busy at work seeking and destroying the cancer cells!  And in doing so, they emit a protein that causes inflammation in my body and makes me feel like crud.  So the good news is that the T-Cells are working hard.  The bad news is that it makes me feel lousy.  It should not be permanent.  Thank goodness.  In the meantime, the doctor decided to break her cardinal rule and give me NSAIDs (which she doesn’t normally do to avoid any risk against my liver and kidneys), but I am going to take 2 Ibuprofen 3x/day to help with the inflammation.  Steroids are not an option on this trial.  She is also switching one of my antihistimines to see if it will better help fight the invisible itch without bring back my undeterminable rash.  :/

As always, she was very encouraging.  I was worried that I had done something wrong…allowed myself to get weak.  She just hugged me and assured me that I had not done anything wrong.  Just listen to your body and rest when you need to rest.  We’ll get through this together, just like last time.

And just like last time, we will take this one step, one day, one prayer at a time. 

T-Cell Update – The Itchy & Scratchy Show!

I got an email yesterday from someone who follows my blog asking for an update.  I realized that I have only been updating on Facebook.  I am honored that there are so many folks out there who follow our journey and take encouragement for their own.  So let me catch you up a bit on what’s been going on….

MARCH 4, 2015

A morning of labs, followed by a lengthy, difficult time getting a PICC line put in.  Hours after expected, we ended up in Dr. Shah’s office to sign consents and proceed to admissions.  Since it was already late in the day, they actually had a room ready.  But the orders weren’t there yet, so there was more waiting.  Paul wore his #BTHOCANCER shirt in case we ran into my friend, Russell, who was also being admitted that day.  (Paul had been praying but had never actually met him.)  

We finally got to my room around 6:30-7:00pm.  Then comes the lengthy check in paper work.  By the time we were all settled in, we couldn't imagine that they were going to start my Day 1 chemo that night.  But that’s what they did.  However, Paul had already gone home by the time this decision came down…which was ok.  I was fine.  He was not fine.  He likes being there with me.  ☺  Someone, though, had ordered Zofran as the anti-nausea to go with my chemo.  It is written on my chart that Zofran causes “adverse reactions” and they ordered it anyway?!  Fortunately, I am always on top of these things and ask lots of questions and caught it before they gave it to me!  I refused to take it, told them that they could order Compozine or Ativan and we could move on.  They just looked at me.   This was not my first rodeo!  They changed the order.  Chemo didn’t start until after 11pm.  It was a long day!

MARCH 5-6, 2015

Because they didn’t give me my chemo until late the night before, all three chemo doses would have to be given late at night.  :/  They have to be given 24 hours apart.  The fortunate thing is that this is a relatively short dose compared to the 2-4 hour doses that I have had in the past.  These days, I just tried to get my walking in, went to the exercise class, visited with our old pastor friend, and gave my mom a birthday hug and card.  

MARCH 7, 2015

All I remember about Saturday is that my friend, Kay, came all the way from Nacogdoches to visit me; and our dear friends Gene & Deidra drove down to spend time with us.  I did not get to enjoy or even remember much about their visits because I was sick as a dog all day long.  Headache and nausea.  I couldn’t even keep down a sip of water.  It was a bad day!  I don’t remember anything else.

MARCH 8, 2015

The nausea finally subsided, but I felt like I’d been run over by a truck.  All I ate that day was a peach smoothie and a pineapple smoothie.

MARCH 9, 2015

CELL DAY – I posted on cell day.  The thing that stood out was that God once again sent Myra!  Sometimes God just cracks me up!!  ☺  The cells only took about 20 minutes this time.  Very quick.  I felt so much better by Monday.  I have also learned how to stay “ahead of the pain.”  I learned this during my last stretch.  I used to think that I needed to be brave and not ask for pain meds until I really needed them.  Wrong!!  As soon as you feel the least twinge of nausea or you have that indication of an oncoming migraine, take the appropriate medication.  Trust me on this one!  Ask the nurses.  It’s huge.  So even though I felt better, I still felt headaches and nausea coming, but I stayed ahead of the pain!

MARCH 10, 2015

We thought I might have to stay until the 11th for observation, but they decided they would let me go home.  So Paul came back on the 10th and re-watched the video on how to flush my PICC line and change the dressing.  After seeing all the appropriate folks and signing all the appropriate papers, we were on our way north.  It was so good to be back in our own bed…without being tethered to a pole!

MARCH 11-13, 2015

I had to go back to MDA each day for labs and clinic.  My WBC continues to drop.  My platelets bottomed out and are beginning to come back up.  I’m tired.

MARCH 16, 2015 

I went back to MDA again today after having the weekend off for labs and to see my doctor rather than just go to clinic.  My WBC had continued to drop and is now down to 1.0, so I am extremely immunocompromised.  I also got fussed at (reasonably so) for spending too much time outside this weekend "supervising" Paul’s yard project.  No more yard projects until my numbers come up!  I did wear my mask and gloves!!

I also had some oral "mucositis" which is not what it sounds like.  Chemo patients often get mouth or throat sores, or worse.  Mine is mild.  Please pray that it stays that way and gets better soon.

I had to get a neupogen shot which will help stimulate growth of white blood cells and help my body fight against infection.  The one unfortunate side effect is that it causes bone pain...because the cells are so busy in there reproducing that it makes your bones ache.  Really bizarre.

Other than that, she told me to stay put, read a book, write a book, walk, that's it!  No gardening, no kids, no painting the house.  She's no fun! 

So thankful for a great doctor.  So thankful for a great God!

MARCH 17, 2015. 

After a long MDA day, I was exhausted and achey and looking forward to sleep.  Just as I was about to doze off, the second side effect suddenly hit.  My entire face started itching, then my whole head, then body.  Then we remembered when I used to get this the last time.  Two Benedryl didn't even knock it out, so I eventually got up and wrote until 2:20.  Slept a few hours until the itching woke me up again. 

My friend, Russell Lambert, who just went through his SCT, is struggling with side effects at a much higher level right now.  Mine are just tiring and irritating.  His are painful and exhausting. Thank you all for your continued prayers.  God gives grace for the day.

"Trust Me one day at a time.  This keeps you close to Me, responsive to My will.  Trust is not a natural response....  Don't let your need to understand distract you from My Presence.  I will equip you to get through this day victoriously, as you live in deep dependence on Me.  Trust Me one day at a time." (Excerpt from Jesus Calling)

"O Lord Almighty, blessed is the man who trusts in you." Psalm 84:12

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34

"In Him our hearts rejoice, for we trust in his holy name."  Psalm 33:21

"You will keep him in perfect peace whose mind is stayed on You, because he trusts in You." 
Isaiah 26:3

T-Cell Day...And He Sent Rest

I opened my Jesus Calling devotional this morning, and the first word was "Rest."  How appropriate on a day that could be filled with apprehension. It went on to talk about a "cushion of calm at the center of your life, where you live in union with God...where you are energized, filled with His love, joy and peace."

My hospital door opened first thing this morning, and who should walk in but my sweet Myra!  For those of you who have followed our journey, Myra is the nursing assistant who ministered to me in such an incredible way the morning of my SCT in 2012. We looked her up a few months ago, when we were here visiting Matthew, and got to hug her neck and talk with her for a while. We learned then that she was planning to retire April 15, just after her 65th birthday on April 9th. We couldn't have been happier for her, but we were also hoping that if I were to be scheduled for anything (I hadn't been at that point) that it would be before April 15!

After we got settled in here last Wednesday, we made a point to find out which wing Myra was working. I am in the southwest wing, and she is assigned to the southeast wing. Pooh!  Well, I got to see her during my walks, and she is as loving, kind, and encouraging as ever. She asked me my room number and said she would make sure to get by on my cell day. Which brings us to today.  She walked into my room and told me that they had reassigned her to my wing for the day!  She had forgotten that this was my exact cell day. She was just tickled to have a day with me. When I told her what day it was, we both knew right then that God had orchestrated that move!  Myra had been with me on cell day #1 and she would be with me on cell day #2.

The last line of this morning's devotion reads "Live in the light of my presence, and your light will shine brightly into the lives of others."

"But the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control."  Galations 5:22-23a

Myra has spent a lifetime exhibiting these characteristics to her patients and I'm sure to her peers. She was a huge blessing to me on one of the biggest, scariest days of my life. And now God has sent her to me again. She is like God with skin on....

"No one has ever seen God; but if we love one another, God lives in us and His love is made complete in us."  1 John 4:12

"Let your light shine before men, that they may see your good deeds and praise your Father in heaven."  Matthew 5:16

Myra, as you begin this new phase of life, as you visit your mother in California, as you dote on your grand and great grandchildren, may "rest" be part of your reward. You have "finished the race," you have "kept the faith.  Now there is in store a crown of righteousness, which the Lord will award you on that day, and to all who have longed for his appearing."  2 Timothy 4:7-8

Thank you, Myra. Well done.