Make a Joyful Noise

For those of you who were in the CBC youth groups during the years between 1981-1999, I had a dream last night that included many of you. So many faces. It involved one of my favorite aspects of youth group (besides Tremendous Tuesdays) and that was music!

Getting fifty, eighty, one hundred teenagers to lift their voices in praise could be a daunting task, but when accomplished, by the grace, mercy, and power of the God, it was a most amazing thing. More amazing than the adults. It was something that lifted my spirit to another level.

I was allowed to visit there again last night, not back in the day but back with your children. Many of you have been posting pictures of camp pictures, VBS pictures, and other summer Christian kid activities your children are enjoying that you enjoyed as well. What a blessing to see you pass these things on to the next generation.

My heart sings with joy and is lifted in the same way it was lifted so many years ago. Thank you for blessing your children. Thank you for blessing those of us who had small parts in watching you grow.

Day 56. Latest Updates.

Yesterday was my ATC day and I received quite a bit of information. So I wanted to share a variety of prayer requests and updates.

First of all, my Tacro labs came back very low (2.8) so they had to increase my Tacro meds (the ones that work on my GVHD) from 3-am/4-pm to 5-am/5-pm. An increase of another three pills per day will increase the possibility of headaches. Ugh! However, I did confirm that the increase in my Topamax does allow for three Oxycodone AND Dillaudid for a total of six pain pills per week if needed. However, there have been times when I have needed that many in two days...but not in the last two weeks. So the short of it is, please pray that my Tacro numbers stay between 7-10 and that my headaches would be minimal.

I also learned that they want me to stay at mom's for at least another month, based on if I don't have any more hospital visits, longer if so. Tomorrow will mark two weeks since I've actually been in the hospital, but the incident Sunday a week ago, Father's Day, counted as an "incident" because my bags were packed and they were ready to take me.... So Sunday will count as my true two week mark. Things have gone very well at my mom's. She has been most gracious. And I know that in the years ahead, we will look back at these weeks with very tender memories.

They are also looking to wean me from the ATC. I was going to ask, but didn't want to seem pushy since it's only been a few weeks. But Dr. Shah brought it up since I have been doing some better the past couple weeks. If I do not have any more incidents over the next two weeks, I will continue in the ATC through Friday, July 6, and start weekly labs and seeing Dr. Shah in her clinic once a week on Monday, July 9. I will continue that throughout July, and then we are scheduled for our first Survivorship Class on July 26, followed by another round of tests (labs, CT Scan, Bone Marrow Biopsy) on July 27. After that, we should better know where we stand and what is next in our process.

In the weaning process, I will be taking in one fewer fluid pack each day, so the responsibility of fluid intake will weigh heavier on me to make sure I keep my kidneys and liver flushed with all the meds I'm on. I can't imagine drinking any more than I do now, but please pray that I stay properly hydrated. I should be able to tell by my output.

I also learned that it will be early October by the time I would be eligible to be considered for vaccinations. We talked about the things that I am still not going to be able to do for quite a long while. It's hard because so many are such a part of me. But I continually have to remind myself to look at the big picture. God has given me a new lease on life. The little things, and even some of the bigger ones, will just have to wait. I do believe I have written extensively about waiting on the Lord. And so we continue. His goodness continues. His mercies are new everyday. Great is His faithfulness. How can I give any less?

Day 53. Paul’s New Prayer/Goal. Mine, too.

Sometimes they’re as obvious as the noses on our faces.  Other times, they seem to take some thought.  Either way, Paul is usually the one to know what the goal needs to be.  Right now, the goal is to go one month without being admitted into the hospital!  I can’t say to go one month without “going” to the hospital because I “go” every Tuesday and Friday to the ATC (Ambulatory Treatment Center, for those who have forgotten the term).  I almost blew it last Sunday, but I was determined (as you may have read in a previous post) NOT to go back just three days out from my last release.   That was a close call.

In addition to that goal is one that has hit me squarely upside the head this past week.  That is how very weak I am.  While the med balance is fair to middling and on the improving side, I am skinny as a rail and losing muscle mass.  My energy level is 0 to 1.  I try to “do” and I end up with a headache.  And with the increase of my Topamax, I am now limited on my pain meds to three per week, so I don’t have the luxury of a headache!  So I have to do a little at a time, take a nap, do a little more, take a nap….  For those who have known me more than five minutes, you know this is very difficult for me.  If the fatigue of last fall was difficult, this is impossible!  Of course, nothing is impossible with God.  But it would be without Him! 

So Paul’s prayer (and mine, of course) is to keep me out of the hospital for a month, then we will re-goal.  My prayer is for the patience to endure the slow process of rebuilding strength.  Oh, wait.  I know what happens when we pray for patience!!!  Let’s change that to praying for small daily successes in rebuilding strength…with patience along the way.  :)

Now maybe I can go back to sleep.  

Have I Mentioned.....?

For the past four days, I have called Bethany and asked, "Have I mentioned that the tests results came back that I have level 1 of 4 of intestinal GVHD?". She very patiently answers, yes...each time. And then with a smile in her voice tells me that when I ask the next day, her answer will be the same.

I'm not sure if this memory thing will be permanent or not, but I am thankful for loving and patient family and friends who have fun with me without making fun of me.

Have I mentioned....?

Days 44-48. It Got Scary, But I'm NOT Going Back...today!

We got back home to mom's Thursday evening to a lovely dinner from my HS friend Mary Meadors Payne. Friday, Day 44, Bonnie took me back for me ATC follow up. It was amazing to see how quickly my BP had come back down to normal, 120/69. Saturday, Day 45, mother and I took an outing to Lowe's to look at paint chips for the porch cover Paul is building for her then to Kroger's for just a few items. By the time we were back, I was exhausted and it was time for the Walgreens Infusion Home-health lady to come and teach me how to set up my home fluids. After that, I ate lunch and took a much needed nap.

By that evening, I had the headache that wouldn't quit. It required three different types of meds to finally bring relief, over a 6-8 hour stretch. By morning of Day 46, Father's Day, it was better but I was very tired. We enjoyed koloches on the "porch," then drove Mama-O to Bridget's to celebrate Father's Day and my brother's 58th birthday (you heard it here) and to get some hugs and waves, came back and napped until 12:30, awaiting the kids to arrive to celebrate Paul's Father's Day. Was ok for the afternoon.

Napped again as soon as they headed their various ways. Paul woke me up to remind me that we still needed to run out to the house to pick up a few things. So we headed out. Before we ever arrived, the nausea began, with roadside stops along the way. I don't really remember what all we got at the house. He took care of that. I napped and/or stayed in the bathroom. When we left, I brought a bucket with me...much needed. By the time we got home, Paul was on the phone with the doctor, throwing my stuff back in the truck, telling her that he's bring me back in, and me hollering in the background that I'm not going back! I won! It was a long night, but I just could not go back. I was finally able to keep down the meds they would have given me there and practiced slow deep breathing until I could get it under control.

The payoff was that Paul would have to get me to the ATC Monday morning, Day 47. No problem! More questions, more ideas. But I did get a much needed 3 hour nap!

Today, Day 48, Renee drove me to my Neurology follow-up appointment. The long and short is yes, I can touch my nose, my peripheral is fine, I can walk toe to heel, and they are going to now again double my Topamax to 200mg per day. That's a lot! Just an FYI. I still have my 25's so I can take 75 or 100 when they bring my doses back down. I am not allowed on this level of Topamax to take Dilaudid or Oxycodone more than 3 times per week so PLEASE pray that the Topamax keeps my headaches at bay. And Maxalt is still on a let's see basis.

The nausea...I think I'm just supposed to breathe, or was that.......

Day 43. Lots of Questions. All the Same Answer.

Yesterday brought very good news! But with it brought a ton of questions.

Can I be around children now?
Can I go to family gatherings now?
Can I go to a restaurant?
Can I go to church?
Can I go shopping?
Can I clean my house?
Can I even go home?
Can I work in my yard?
Why do I still feel bad?
Why am I still so tired?

The answer to all of these questions and more come down to the simple fact that I am still just over a month old! I have no immune system, no natural immunities, no immunizations, and I will not qualify to be re-immunized for quite some time. So the simple, deadly, forgotten things like measles, mumps, rubella, and all the other diseases immunized during infancy, I am susceptible to. Currently, I have the sniffles. Most of you probably do too. But this is not a good thing for me.

When will I be able to do more? Good question! We don't know. We ask permission about specific things. I went to the store once or twice with Paul (when I was doing better), donning my mask and either wearing gloves OR washing my hands immediately before and after touching anything. I didn't last very long. But it was nice to get out! Though I looked like a crazy germaphobe!

Before Bethany & Co. move to Frisco, you can guarantee that I will be asking permission for some sort of visit. Mask, gloves, and gown if necessary. But if it's been a certain time frame since Ethan's immunizations, the answer will be no. I cannot begin to say how hard this is!

But Paul is in this for the long haul. He makes the tough calls when I can't. Even when he knows how much it hurts me. We have to stay focused on the big picture. There's going to come a day when a white Ford truck is going to fly up I-45 and find the new Hopson home for the first time. Until then, thank God for Skype!

The last question of the day was whether or not I was going to get to go home to mom's. The team just came in with the partial results of yesterday's upper/lower GI scopes. Initial results look good. Final biopsies next week. So....hi-ho, hi-ho, it's off to mom's we go..... :)

Maybe she can put some weight back on this 113 lb frame.

Day 42. REMISSION!!

I guess I could have chosen a title that would have kept you guessing a bit further into the post, but I just couldn't. My team came in a while ago to review my current situation regarding the ongoing headaches and nausea and to let me know that my MRI came back completely normal. (I'm thinking of having that one notarized!).

They have had me on no food or drink since midnight (it is now 1:30pm...), and I have an endoscopy scheduled at 3pm. They did approve for me to take my meds with the tiniest sip of water. I have ended up napping more today. If I can't eat, sleeping helps me not think about it. This test will hopefully rule out GVHD as the last possible culprit, leaving drug balancing as our final act.

Just as they were about to leave, I remembered to ask for the results of my bone marrow biopsy and DNA analysis. Because the focus has been on the problems at hand, the big picture news got swept under the table. The rounds doctor quickly gave the good news and went on her way, then sweet "too tall" printed the results and fully explained them to me. The DNA results indicate that M-47 "comprises approximately 98% of the total DNA". This is remarkable, incredible, miraculous, and totally God! The bone marrow biopsy shows that "there is no diagnostic morphologic evidence of lymphoma" (or leukemia). I am officially in remission! Praise God from whom all blessings flow!

There is still a road to walk. The reason I have been in the hospital is still before us. GVHD is a creature that can still attack in months to come. But God is faithful. He has brought us this far. He will continue to carry us through. We have shed tears of fear, tears of pain, tears of the unknown. Today, we shed tears of joy as we give thanks for this amazing answer to countless prayers.

Psalm 100
"Shout for joy to the Lord, all the earth. Worship the Lord with gladness; come before Him with joyful songs. Know that the Lord is God. It is He who made us, and we are His; we are His people, the sheep of His pasture. Enter His gates with thanksgiving and His courts with praise; give thanks to Him and praise His name. For the Lord is good and His love endures forever; His faithfulness continues through all generations".

Amen.

Days 38-41. Still Pooping after All These Days

While this is not the primary issue, it does seem to make the top three questions of the day. How's your poop? How much is there? What is the consistency, frequency, and general make-up? Where does your tummy hurt? How do these coordinate with your headaches? Which came first, the nausea or the headache? Which is worse, the headache or the nausea? Is the nausea always productive or does it just make you feel queasy, or better yet, does it just make you feel like poop?! :) How often do you throw up? The list goes on.... How I long to just have a normal conversation that has nothing to do with my own personal poop quantities or feelings. We can talk about your baby's poop. That is perfectly acceptable!

For those who have been praying and asking about my numbers, they look good. My "numbers" officially consist of my WBC (white blood count), HGB (hemoglobin, to see if I need a unit of red blood), and PLT (platelet count, to see if I need platelets for clotting). Mine are great. I could probably donate platelets!

Yesterday, Day 40, I had two consults with my regular stem cell team plus the neurology doctor. The stem cell team was considering sending me home, but nothing has changed; I'm really no better, just medicated. So Paul and I had already decided to decline that offer, as attractive as it might sound. We prefer answers and a plan. After discussing further, they agreed. Especially the others on the team, like brown eyes and too tall.

They have gotten with Neurology and scheduled an MRI for today, Day 41, to rule out anything that direction. It is highly probable that they will also partner with the endoscopy team and schedule a scope to rule out GVHD. That will leave us with what it probably is...the vicious post transplant meds that could be the culprit of these headaches and nausea. However, we need to find a better way of managing the pain without relying solely on opioids, which continue to require more drug to do the job, and can create physical dependence then lead to a difficult withdrawal process. I have heard from several friends that it can take months to finally happen upon the mix of meds that works best for your mix of mess. So patience is key.

It looks like I will probably be here at least until tomorrow after the scope. If so, I would imagine they would schedule me for ATC on Thursday and Friday and hope to get back to the twice a week, Tuesday/Friday ATC trips by next week. Now this is me talking. I don't get to make the schedules. A girl can only dream...... My dream is to get back home to my hubby and start moving forward little by little.

For now, my numbers are good.  My potassium is good.  My Tacro is good. Our God is good!  Everything is going to be fine...in His time.  Thank you for walking this walk with us!

Anything less would just be poopy! :)

Days 34-37. Hoping that the Third Time's a Charm!

As I have noted in a previous blog, Bethany first, then we noticed that I was getting sick just about every 5th day. While it was very encouraging getting out of the hospital in just under three weeks after the transplant, having to return now three times to the EC, the first time lasting 13 hours, and the second two times being admitted is not very encouraging.

Tuesday Day 34, stared by throwing up. Is there a nicer word for that? Regurgitating? But that was followed by a delightful caredriver in Vicki Schellenberger, who took me to my ATC appointment, which was fairly uneventful if I remember correctly. But of course, that was three days ago! Best ask Vicki! However, I DO remember, because I have it written down in my notebook, that I had a headache all night and got no sleep. I also have which meds I took at what time, but I'm pretty sure that would be going too far in what you're interested in reading.

Wednesday, Day 35, began with a 6:15 regurgitation that wouldn't quit. We were back at the MDA EC by 10:30am. (We learned that it's not called ER at MDA. It's the EC...Emergency Center, probably because there is so much to it. Almost a half a floor, individual rooms, and a lot more which Paul would be much more able to tell you about because I am always out of it while there.). They got IV meds in me right away, several types of tests run including CT Scan, EKG... (Paul told me this; I don't remember.). It took a long time to get a room (I do remember that), and it was at least 2:30 before getting admitted to P7 24, Critical Care Units. They still couldn't get me back on Stem Cell, but they are still trying. The rooms on this floor are tiny, but the nurses are extremely efficient and that's what is important!

They were on me like white on rice. They had me hooked up with electrodes for full-time EKG monitoring, that thing on your index finger that monitors heart rate, and of course all my CVC lines were busy with meds connected to my beloved pole. Throughout the evening and into the night, they did more CT Scans, Chest X-rays, etc. Again, between the headache, trying to maneuver all the wires, and all the nighttime checks, I got very little sleep.

Thursday, Day 36, every doctor team from neurology to my regular stem cell team came to visit, work, coordinate, plan, question, reason, wonder, and hope that this course of action might work...for more than five days! They put me back on the steroid IV. (Yes I will re-plump but I will not cry this time.) Then they will increase my level of Topamax, hoping that the higher dosage will better maintain the headaches. The problem seems to stem from the vast majority of my maintenance drugs necessary from my transplant. Almost all either cause headache and/or nausea. And I cannot get rid of those meds. So we have to figure out how to manage the side effects. The bad news of the day was that I had my first real fever. They gave me IV antibiotics. The good news of the day was that they removed the EKG electrodes and finger heart monitor, I had no headache or nausea during the night, limited night checks, and I slept like a baby! What a blessing!

Friday, Day 37, the headache started inching back this morning and by the time I had finished a mid-morning breakfast and finally returned several phone calls, it was back in full force. My sweet nurse, Oanh, filled the IV pump with the good drugs, brought me a cool cloth, turned off the lights, and made sure I had some uninterrupted sleep. I felt quite a bit better an hour or so later. Paul came up after a shorter day at work, brought my packed bag from mom's, helped me with my CVC patch and shower, and we enjoyed a nice but too short visit. He needed to get the yard mowed, the bills paid, take care of the house (why does the house continue to have needs at the same time I do?!), so he can come up and spend the weekend with me. They plan to keep me here until Monday.

So this journey of ours continues to be a bit of a rollercoaster. But we will continue to fight the good fight. We will keep the faith. We will finish the race.

Day 31-33. The Brady Bunch

Nothing really happened during this stretch that justified this title. It's just where my head is. More on that in a bit. We just got to enjoy our second weekend pass, started by a masked and gloved trip to Lowe's where Paul was making notes and pricing lumber and posts for Mama O's upcoming back porch project. Figured it was the least "we" could do for needing to live with her for the majority of the summer. Plus, she's always wanted one.

Back to the subject at hand. Remember how when we all had kids, they never came with any instructions? Well, step-kids are no different! In fact, it may be worse. You are always pretty sure with your own kids that your love can undo most any goof up you might do. With step-kids, you never know if they know that you love them or if they even want you to love them. (When I got into blogging, I realized that it could be for the benefit of others walking a similar road, so I hope you do not mind this slight detour).

When we were growing up, there were very few divorced people, at least where we lived, and there weren't many depicted on television. When The Brady Bunch became such a controversial but huge hit, the Brady kids took a while to warm up to one another. Before long, while they might not always get along, they definitely had each others' backs...plus they could sing! :)

I have noticed that everyone, every one of our kids, given birth by me or not, has had a unique response to my disease. Some were emotional right from the beginning. Some have expressed love in practical ways. One in particular keeps me laughing. One calls me everyday and just talks about everyday stuff. I used to think he was in denial, but I know better. I think some just don't know what to do with it, with me. And I guess that's ok, too. I'm here to say that I'm still me, I'm still fighting, I'm still smiling, and I'm still here. I'm here to stay.

After I finish writing the book on overcoming Leukemia, I will start on the one parents should get when they first give birth. Then I will follow with one for step parents. I'm not going to give away all my secrets, but I will say that the main theme that must run through them all is communication. Whether it's learning to live with or fight against a deadly disease, raise young children, or love and respect grown ones, it all comes down to communication.

At least, that's what Jan said!

Days 27-30. My New Normal?

Tuesday, Day 27, started early with CT preparations, including a delicious berry-flavored barium drink ingested slowly on an empty stomach, then I don a lovely scrub set, followed by insertion of an IV line (no, they can't use my CVC because there will be contrast utilized), and then a second berry drink. They did a chest x-ray during this time as well. Once I was good and coated, they took me back to the machine room where the young gentlemen have me finish the last glug, lie down on the comfy accommodations, roll me over a bit to insert the last in humiliation and discomfort, then put my hands over my head on the box provided and hook up my IV. They are always very gracious. I have gotten into the swing of these as they will continue for a long time. But I never do like them. They make my tummy nervous on the day of the event. Not getting to eat, taking meds on an empty stomach, and drinking barium obviously doesn't help. The test itself is no big deal. Breath deep, hold your breath, breathe. Some tests are done with and without the contrast, which goes through my IV. It feels warm and kind of weird. But no big deal. Lots of water and trips to the bathroom are required the rest of the day.

From there we went to have labs drawn. Since I had Monday off, they had to do the live stick to check my Tacro levels. Then we were off to the ATC where I slept for most of my three hour infusion. I think Paul walked around a bit, but he was there when I woke up. That was our actual anniversary. Our nurse asked if we had a love story, so we happily told her ours. She was so cute!

Once we were done, we headed back to mom's for dinner and evening on the back porch. Unfortunately, nausea seems to again be my daily visitor, just not as severely as before.

Wednesday, Day 28, Aunt Polly was my care driver one more time before heading off for vacation. We agreed that even though neither of us would have chosen the circumstances, it has been a blessing to spend the extended time with each of my care drivers! It's been a once in a lifetime experience. The typical ATC day includes labs, vitals, then ATC...a three-hour infusion of whatever fluids I need that day as determined by the labs. On my days off, I have a portable pump, bags of saline fluid, and saline flushes for my line so I can do my infusion at home.

We have noticed a pattern of feeling bad every five days or so. This was day five. :/ I was nauseated all day and finally lost the battle that evening. Fortunately, I have a variety of nausea drugs depending on what's going on. The highlight of the evening was our pastor and his wife coming over bearing dinner, dessert, and anniversary flowers. (I had just been approved for cut flowers. Still no dirt.). Unfortunately, I didn't get to enjoy it's deliciousness until the next day, but it was yummy and appreciated. The company, conversation, and prayers were equally so.

Thursday, Day 29, was my day off. Paul came home for lunch to help me with my pump. Next time, I'll be able to do it by myself. Ron took my mom to a new ENT doctor and they were both very pleased and encouraged. He is referred to as "Dr. Dizzy". He was very thorough in both verbal and physical examination. They are scheduled to go back on June 13th. Thank you for your continued prayer for my mom. She is healing from the fall, but is definitely having dizzy spells every day. My Aunt Dottie and Ms. Virginia are both recovering in rehab facilities, and Ms. Sue is still in the hospital.

I started an "exercise program" on my off/home days. I put that in quotes because right now it doesn't seem very impressive. Mother has a treadmill and an exercise bike. My doctor said to start small, and I did. I was only able to do five minutes on each at the lowest setting. But it's a start!

Today, Day 30, Bonnie is driving me to my ATC appointment followed by my rescheduled bone marrow biopsy. This will be the first time that I won't have Paul there for this procedure. Pray for Bonnie! I may be leaning on her a bit more than normal by the end of the day.

Then, if all of my numbers are good, I get the entire weekend off...with pump! What a joy! And if that goes well, my "new normal" will be Tuesday/Friday ATC, pump and exercise other days, home on weekends. Sounds glorious!