Day 7b, 8

As exciting as Day 7 started, I was quickly reminded why I'm here. Nausea, more aftereffects from the chemo, returned with full force. :( Fortunately, the wonder drug Regalin came to the rescue, but also brought extreme drowsiness...which definitely wins over nausea. Later in the afternoon, the nausea again returned. This time it had to face the more powerful Attivan, which causes drowsiness squared! Mother had been with me that day, and Paul had come up after work. He had been here 1.5 hours before I ever knew it! The good news was that I slept like a baby that night, and the nausea was kept at bay.

Day 8 started with a phone call from my mom. I knew at the sound of her voice that something was wrong. She asked if Paul was already here, and if not could he stop by her house on his way. That was about 8am. All she said was that she thought she had hurt herself in a fall the previous night! I called Paul, Ron, Aunt Polly and mom's neighbor Maxine.

Long story short, Paul and Ron got her to the ER where she had a CT and x-rays. She had a cut on the back of her head, bloody scrapes on her frail-skinned arm, a very sore backside, and a horrible headache. They were concerned she might have a concussion, but that was cleared. After tests, being cleaned up, some pain meds, and some rest, Ron brought her home. Paul had already come back to meet Aunt Polly and cleaned the blood from her sheets, washed them, and remade the bed. The first phone call Mother had made that morning was to cancel the cleaning lady who she hired to get the house extra clean before I was discharged. I called to get her back since Aunt Polly and Paul were there. Aunt Polly went and bought ingredients to make chicken soup, which makes anything better!

Paul got here early evening. Ron stayed the night with mom and is taking her to her regular doctor this morning. Please pray that they can determine what has been causing her dizziness. Please pray for quick healing. Praise that no bones were broken, which was a surprise considering the current state of her osteoporosis and RA. Please pray for all of us as I prepare to go home to mother's on Monday. We will BOTH need a caregiver for a while. Praise that Bethany is coming for the weekend.

So Day 8 held the worry and prayers for my mom on one side, and the joy of another visit from Renee on the other side. After a sweet visit, she presented me with another present. (She brought me a beautiful pewter angel on last visit.) I opened the large gift bag to discover a handmade prayer blanket, one side covered with almost all the verses that I have shared on my blog! Tears of appreciation for her love, kindness, and hard work wet my eyes. Thank you, Renee! (I will add pictures here once I figure out how to do that on my iPad!) I continue to be amazed by the loving kindness of you all.

Day 8 was also my last day of Rituxan. It is one of the meds that tends to get bubbled up going through the IV tube. Most times, it's manageable and only slightly irritating. But today's batch was extra bubbly, and the IV alarm must have gone off a minimum of 3,000 times over a seven hour stretch! The staff was impressed that I didn't get annoyed. I was impressed that thet didn't!

More joy was added by spending time with my sweet Paul. We are now counting the days until my release. Just to be in mother's home with no IV pole, no requirements to measure and track fluid in and outtake, no ordering off the special menu (which hasn't been too bad), no being awakened throughout the night, no restraint from sitting outside, no more sleeping alone. I am so thankful that my body, through God's grace, has responded this well to the treatment. While I know this is far from over, we never expected to be moving to the next phase so quickly. I credit that to the faithful prayers of my family and friends. God has heard us all loud and clear.

"Thanks be to God for His indescribable gift!". 2 Corinthians 9:15

Day 7. God is SO Good!

While I did not plan to post anything else today, this news could not wait! During my doctor team rounds this morning, she told me that I was doing so well that (if nothing goes wrong between now and then) I will probably be able to GO HOME this Friday...Day 9!!! This is unheard of! I have called Paul, my kids, and my brother and we are all in shock. This is simply another example of praying and then being surprised when He does immeasurably more than we can ask or think.

This does not mean our house. I still need to be close to MDACC. We will go to my mom's. For the first week or two, I will come back to the ATC (Ambulatory Treatment Center) daily, and then it will drop to four, three, then two times per week. This is all happening so fast!

The topic of today's Bible study was God's goodness. How appropriate was that?!

"For the Lord is good and His love endures forever; His faithfulness continues through all generations."
Psalm 100:5

Day 6, 7. The Pain is Back

I have been doing really well the last few days. I almost feel guilty seeing those around me struggle so much more. My Tacro levels were too high the other day so they reduced the dosage. Fortunately, that resulted in my blood pressure returning to normal. In fact, one nursing assistant thought she should get the nurse because it was down to 100/70. I assured her that was my normal BP. Amazing change.

For the last couple days, the biggest pain has been in my lower back. I assumed it was due to the wonderful accommodations here. :). So yesterday my nurse ordered me an egg crate topper for my bed. It felt heavenly! But it didn't help the pain.

Night before last, my right leg started cramping. First I thought it was a charlie horse, but it wouldn't rub or stretch out. Then I thought that I must have strained it at exercise class. Last night as I was trying to go to sleep, the pain coursed down both legs. That's when I realized what it was. The return of bone pain. :(. I called my nurse and requested that Tramadol be returned to my regular meds.

This was the same pain that began during the early months after diagnosis. After my frontline treatment in March resulted in temporary remission, the pain had subsided. I wasn't expecting this to return. When the nurse came in to check my pain level and bring my medicine, she explained why. The new cells are multiplying which produces the ache beginning in the long bones and moving from there. Lower back, both legs.... By this morning (yes, it's still quite early), the pain has extended throughout my back, down my arms, and into my hands. The Tramadol has to build up in my system before I feel much relief.

But this is good news! The cells are multiplying and making themselves at home. I will know more when I get my blood work results later this morning. Because I had the reduced intensity conditioning chemo, the lowest my WBC has gotten was 0.9. That was on Day 5. Yesterday, on Day 6, we were surprised when it came back at 1.2. We were interested to see if it was a fluke or if it would go up again today. We'll see. I'm beginning to think it was no fluke.

You may recall in previous posts that a reduced intensity regimen relies more on GVL (graft vs leukemia) than the traditional high intensity regimen which gets you all the way down to 0. So the new guys will need to finish killing off the rest of my bad guys (GVL) without killing to much of my good stuff (GVHD).

I used to wonder how fellow transplant buddy, Paul Pavao, could write in the middle of the night. :). I understand now.


UPDATE: My WBC is now up to 1.8. I am definitely engrafting!!

Days 3, 4, 5

After several not so good days, the weekend was wonderful! Well, as wonderful as it gets when you live on the 11th floor of MDACC and have no immune system. Wonderful just the same. I am still struggling with a persistent headache, but fortunately it is being kept in check by meds...most days.

The weekend and my 51st birthday was made extra special by visits, calls, cards, emails, and posts. The first surprise came mid-morning Saturday, Day 3, when two masked ladies strolled into my room. Not knowing who to expect and only having the area outside the masks to identify, it took me all of fifteen seconds to connect the dots! My best friend since we were five years old, Kay Smith McCuller, drove all the way from Nacogdoches, met up with another of our high school friends, Kathy Warren, to pay me a surprise early birthday visit! They came bearing gifts, smiles, hugs, and almost three hours of precious conversation. Then I took a nap!

Paul has been here almost 24/7, except for short trips home to wash, mow, water plants, send me pictures of our newest blooms, check mail, pay bills, talk to social security, insurance companies, etc. Bless his heart!

Sunday, Day 4, started by trying to recuperate from a night full of IV beeps. Sleep and real rest only came when we snuggled close in one of our two little beds. Those hours of closeness was all the present I could ask for.

After a lovely, long conversation with my niece, April, Paul's sister and brother-in-law, Sharon and Tom, joined us early afternoon, quickly followed by my mom. We visited in my room and in the larger family room, taking turns as to who had to wear the masks. Mama's yummy chocolate cake finished the time on an even sweeter note. And another Willow Tree angel was added to my growing collection. Angel of Healing. Thank you, mama.

Day 5. My numbers and my weight continue to go down. My WBC is now 0.9, and I'm down to 116. I tire easily. My tummy has a constant sort of icky feeling. And then there's the headache. But all in all, I cannot complain! God has given me peace in a scary, uncertain situation. We are more confident everyday that this was, indeed, the best treatment choice for me. Our hope is that they will look at mine as a test case and consider this option for others with my negative markers.

I take one day at a time.

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

Matthew 6:34

"But encourage one another daily, as long as it is called Today."

Hebrews 3:13

Days 0, 1, 2

Let me begin by saying that no matter how much we read and researched, nothing could fully prepare me for this most miraculous, exhausting, humbling experience. I am thankful for my God. I have no clue how anyone could go through this without His constant source of strength and peace. I am thankful for MDACC and the amazing team of doctors, nurses, and staff who combine incredible expertise with care and kindness. I am thankful for my husband. He is the air I breathe. I am thankful for my mom and her gentle presence, and all my loving family and friends who have stayed in regular contact and have kept me diligently in their prayers.

I haven't felt well enough to write, so I'm going to catch up while I can. Today seems a little better. Let's go back to the night before my transplant....

DAY 0

Everyone says that the actual transplant day is probably the most anti-climatic of the entire ordeal. I knew that. But anxiety definitely got the better of me during the nighttime hours before Day 0.

The ATG I had received on Days -2 and -1 elevated my blood pressure and heart rate. I normally have low/normal BP and a resting heart rate of 68. It has now been "resting" in the 90's and spiking to 144 BPM. I feel like I've been running a marathon that never ends.

With my heart already racing, anxiety over the transplant...more about what comes after...took hold. The only sleep I could count that night was when I got out of my hospital air bed and pulled my IV pole over to the Murphy bed where Paul was sleeping uncomfortably. I spooned up next to him, and with his arms around me I was finally able to relax. An hour and a half later, I woke to realize that his entire left side had to be asleep and in pain, but he never moved me. When morning came, my heart was again racing and the tears were following. I can't really explain why. It was all so incredibly overwhelming. This treatment is not just chemo attacking the bad guys so the good guys can take over again. This is chemo that kills everything, and then being re-born at the most basic cellular level with someone else's baby stem cells carrying the hope that they will make a home at their new address.

Just when I thought my heart would beat out of my chest, God sent an angel. Her name is Myra...a sweet, older nursing assistant that had been assigned to my pod for a couple of days. She came in, wrapped her loving arms around me, and from her lips and heart delivered the best sermon and testimony I've probably ever heard. "...Don't let the devil bring those tears. GOD is ALL you need!"

About 10:30am, Janet and Meaghan started my pre-meds, then from 10:45 to 12:50, 90,394,000,000 (that's 90 Billion, 394 Million!) baby stem cells made their way into their new home through my CVC. Amazing. Just another bag on my IV pole. But it was the bag of life!

Day 1

Constipation was the word of the day! Because of the high doses of pain meds, etc. needed to combat the pain from the killer chemo, I was stopped up to my eyeballs. The long and short of this day was ingesting several doses of senna and Miralax, followed by a Lactulose chaser. That finally got things going, after a walk that had me in tears both physically and emotionally. We had to get that moving so I could get started on my day-long Rituxan. All in all, it was a miserable day (except for a nice mid-afternoon visit from business buddy, Dave Kinler, who was at MDA for his tests). The team decided on one more round of senna and Miralax in the evening. I don't think that was the best idea.... Things then went the other direction. Ugh! Just to put it in perspective, the morning of Day 1, I weighed in at 130. Twenty-four hours later, I was down to 122 lbs. That's a lot of poop!

Day 2

Last night was the most sleep I've gotten all week. While I was still up documenting "output" every 1.25 hours, I was able to sleep some in between. In between 11:30pm vitals check, 3:30am vitals check, 4:00am labs, 5:00am blood draw to check Tacro levels (done M/W/F from arm, not CVC). :( In between tummy cramps and trying to find a comfortable position without getting tangled up in or squishing all the tubes protruding from my chest. In between all that, I slept great! :)

My amazing doctor team came in this morning and declared it to be official recuperation day. It's been a busy, hard week. My goals today were to get dressed (check), go to the exercise therapy class (check), get a nap, and prepare myself for the next phase...waiting to completely bottom out, then the slow climb up.

Day -1. AM/Truck. PM/Sunshine

The ATG, the one that was supposed to cause the "shake 'n bake" effect, has so far taken the high road. My main side effect has been very increased heart rate (like aerobic workout level) and increase in blood pressure. So it was probably a good day to just sit and visit. They told me to lay off walking until my heart rate got a little closer to normal.

I thought that I was fairly clear of any other ATG side effects until waking in the wee hours of this morning to flu-like symptoms (which was on the list) such as a stuffy nose, cough, low grade fever, and basically feeling like I'd been run over by a truck. Thought I'd already had that experience back during the Campath era. :/

After my 4am blood work and vitals check, I was able to get back to sleep until I woke to the ever recurring duo of headache and nausea. So the good nurse put together my cocktail of meds which ward off the dynamic duo and make me sleepy. I dozed off and on again until the pain was better and the truck was removed from my bumper.

At the time I began writing these notes, I was getting my second dose of ATG. We'll see later whether I will get to enjoy a little "shake 'n bake" or just another truck running into my lane. Either way, nothing has been as bad as the weekend, and I lived through that.

Then more sunshine poured in! Our sweet pastor, Dean Wood, and his precious wife (and my former youth group student), Kelly, blessed us with a wonderful visit and a thoughtful gift from Creekside that warmed our hearts! Our church collected goodies and snacks for Paul to enjoy during his hours of standing vigil. There were also precious notes from young and "old" that I am adding to my picture and card wall. Thank you for sharing your love in such a tangible way! Toward the end of their visit, my cousin Gaydene joined the group bearing another birthday card and sweet hugs and smiles. The precious time ended with Dean leading us in prayer...and my IV pole demanding some attention. Thank you all for ending our day with rays of love and light!

As God puts us on your heart to pray, please also consider these:

Pray that my donor would be blessed for giving the gift of life and that he will recuperate quickly.
Pray that my side effects continue to be manageable.
Pray that my body accepts and engrafts its new, baby stem cells.
Pray that our friends Gerry and Vicki will feel God's leading and peace as they weigh and pray the best treatment options for her cancer...and for a wonderful trip away before it all starts.
Pray that my business buddy, Dave (the one with lymphoma), would respond exceedingly well to his newest anti-74 regime. If this doesn't work, he too will be transplant bound.
Pray that Paul Pavao, the gentleman whose transplant blog we followed the whole way, will be blessed with exceptional, ongoing, healthy results now that he has passed Day 100! :)

"Now to him who is able to do immeasurably more than all we ask or imagine according to his power that is at work within us, to him be the glory in the church and in Christ Jesus throughout all generations, forever and ever! Amen.

Ephesians 3:20-21

Day -2 My Garden

Yesterday, my nurse gave a wonderful analogy of the stem cell transplant process by relating it to a garden.

The first step in gardening is to prepare the soil. The various chemos and immune suppressant drugs (like my two days of ATG) work to till up the soil and pull up and kill the weeds and unwanted grasses. My potassium and magnesium levels are constantly being monitored and fortified so that the soil is rich.

Once the soil has been adequately turned, it's time to plant the seeds...or in this case, the new, baby stem cells. As with any new plant, it must be nurtured to grow and protected from the bugs and environment that could destroy them. So all of my counts are monitored closely and I am analyzed regularly for any signs of invaders. Yesterday, I was started on Tacrolimus (Tacro for short) and will remain on it 24/7 while I'm in the hospital. They will switch me to the pill form once I start ambulatory care. Tacro fights against GVHD (graft vs host disease), so it's like putting an anti-fungal and pesticide treatment on your plants.

Our new garden also needs nourishment. Plenty of water and nutrient rich foods. The best gardeners use Miracle Gro. My Miracle Gro comes in the form of Neupogen...yes, the same Neupogen that I received during my month of Campath. It will assist in boosting the neutrophil production. The water is up to me.

Every garden needs sunshine, and it can come from many sources. A friendly smile, a good laugh, music, my little window bringing the outside in, the prayers of many, the Light of His Word, and visits from family and friends.

Day -2 brought a great deal of sunshine! From my amazing nurses, my husband by my side, and wonderful visits from Mama O, Renee Mayfield Corley (sweet, longtime friend), Gerry & Vicki Benzel (new friends from Creekside), and our dear friends Gene & Deidra Dunn.

After having had a very difficult weekend, Monday was a much needed respite.