Day 117. A Little Birthday Bliss for the Caregiver…

…on the heals of a stressful week.  But I’ll talk about that in a bit. 

For the first time since early April, April 8 to be specific because it was Easter Sunday, we traveled back to Oletha for Paul’s 53^rd birthday to spend a couple days in the place that is probably closest to his heart.  He could have gone up during the summer without me, but he didn’t.  Once I was released to go home, they said I was also released to go to the country…as long as we had a plan in case of emergency.  Paul always has a plan.

He had bought a new tarp to cover the porch and a new battery for the 4-wheeler.  Some birthday presents!  He also used his gift cards from father’s day to replace the fishing poles and reels that had been stolen from our garage.  So armed with our new gear we 4-wheeled to the tank ready to greet the fish that have not been visited all summer.

Paul usually out fishes me every time.  But for whatever reason, probably just luck or maybe it was the new rod, I stopped counting after a dozen and caught all three types of fish that we know live in our tank…bass, crappie, and brim.  There are probably catfish as well, but I wasn’t using that type of bait.  I finally put my pole down and took up my camera.  :)

We relaxed, 4-wheeled around the property, hiked a little down the creek (as much as I could), enjoyed the breeze on the porch, enjoyed the company of our best friends, enjoyed food simply cooked, drank plenty of water, and took my nap.  Simple pleasures.  And I still did what I’m supposed to do.  It was good to get away.

The previous week had been a bit rough.  Headaches and tummy aches had been on the increase.  Plus we had some discouraging news at the doctor’s office on Wednesday.  The final results from the last bone marrow biopsy had finally come in and while the donor cells were 100% in one type of cell, the T-cells which had been up in the high 90% last month were down to 66% this month.  My cells were trying to take over.  Who would think?! 

To try and remedy this, the first step was to take me off the prednisone immediately.  Done.  The next step is to slowly reduce my immuno-suppressant drugs (Tacro) starting this Wednesday and either weekly or biweekly thereafter, testing weekly.  That’s a little scary because it is also what keeps my GVHD down, so I can possibly expect more issues with my stomach.  In fact, I have already had more issues just getting off the prednisone.  This will be a balancing act to see if the donor cells will ramp up and become more aggressive without the GVHD becoming too bad.  :(

The next part of the conversation took me several days to digest.  I’m glad Paul was with me or this post would never have gotten written.  He said that I had the “deer in the headlights” look.  I had planned on driving myself for the first time that day, but because of the headaches he decided to take the day off and take me.  I didn’t even know he had done that until the night before.  Like I said, he always has a plan.  It’s like God just nudges him at the right time.  God knew he needed to be there that day. 

If the medication plan doesn’t work over time, the second option is called DLI, Donor Lymphocyte Infusion.  This is where they would ask my donor to re-donate (ugh) and they would infuse me with only his lymphocytes via IV.  No chemotherapy would be needed. 

If that didn’t work or wasn’t available, then option three is chemotherapy.  I responded well to the first round.  While it wasn’t pleasant, it was effective.  And now that I am no longer 17p deleted, I do not have that playing against me.

So after everything having gone so well, it was a little discouraging to hear this news.  But the medication option may work just fine.  It will just take some time to see.  Please pray that we continue on the positive path that we have been on so far.

My main responsibilities are to drink inordinate amounts of water, get plenty of rest, and trust God.

As I looked back to my devotion on the day of my doctor visit, I saw how God once again was there encouraging me.  His timing is always perfect.

Trust Me, and don’t be afraid.  I want you to view trials as exercises designed to develop your trust muscles.  We live in the midst of spiritual battles, and fear is one of Satan’s favorite weapons.  When you start to feel afraid, affirm your trust in Me.  Refresh yourself in My Holy presence.  Sing praises to Me and My Face will shine radiantly upon you.

Isaiah 12:2  “Surely God is my salvation; I will trust and not be afraid.  The Lord, the Lord, is my strength and my song, He has become my salvation.”

Day 106. Learning to Live in the Quiet

My first days at home alone scream the reality of my new normal.  Quiet.  Restful.  This is what is necessary and prescribed as I continue the healing process.  It’s just so different from my old normal.

My Bible devotional on Day 100 was especially appropriate.  I’d like to share it.

Relax in My Healing.  Allow Me to transform you through this time alone with Me.  As your thoughts center more and more on Me, trust displaces fear and worry.  As your trust in Me goes up, fear and worry automatically go down.  Time spent with Me not only increase your trust; it also helps you discern what is important and what is not.

Energy and time are precious, limited entities.  Therefore, you need to use them wisely, focusing on what is truly important.  As you walk close to Me, saturating your mind with Scripture, I will show you how to spend your time and energy.

“My Word is a lamp to your feet; My presence is a light for your path.”

I haven’t yet found a daily routine that I feel good with.  I need to feel a little more productive.  But that’s just me putting that on me.  I’m committed to avoiding too much television.  I spend time in the Word.  I keep up with the laundry and the shopping.  I cook the meals and clean the kitchen.  I have a couple projects that I want to start, but I just haven’t gotten that far.  I have several piles that I need to sort.  I’m not sure what’s keeping me.  I think a lot.  I move less.

Yesterday, I had the first opportunity to have my labs drawn at the much closer MDA Woodlands location and then have a phone consultation with my doctor.  While we are still waiting for the molecular test results to come back, we did find out that I am no longer 17p deleted!  My donor’s DNA has perfect chromosomes and the test came back at 17p negative.  Perfect!  Thank you, M-47!!!

Next week, I will go back downtown to the MDA clinic to see Dr. Shah in person and drive myself for the first time.  We’ve come a long way, baby!  As she continues to remind me, we still have a long road ahead of us, but we have made good mileage so far.  :)  

Day One Hundred

In the journey of a stem cell patient, Day 100 is a milestone day.  Nothing special happened today, but it marks a time period of success. The results from my bone marrow biopsy were not in yet on Wednesday, so I do not know the updated numbers of my donors percentage of cells compared to my old ones. We were at a remarkable 97% last time, so we are hoping for even better figures this time. Hopefully, we'll hear within the next week or two.

Day 100 also marks the day that I can go home. We took mother out to dinner tonight to celebrate the milestone and to say just a small thanks for all she has done for us. I have been packing up, and Paul is working on his last project for now...the bathroom sink.  As  ready as I am to be home, I will always cherish this time with my mom. It's a rare opportunity that you get to go back to your childhood home and spend this much time with your mother at this age.

We will pack everything up in the truck tomorrow morning and head north. While I had a couple friends ready to come over and help me clean, my sweet husband surprised me, took a day off work this week, and cleaned our house from stem to stern, plus did the yard, weeded the beds, all so I could come home to a perfectly clean house. There are a lot of wonderful caregivers out there. There are a lot of wonderful husbands out there. I have the best of both. But I could write an entire book about that.

Our journey began almost a year ago. So much has happened. So much has changed. But some things have not. The love and faithfulness of our God, our family, and our friends. The prayers offered on our behalf are what have gotten us through. We still have a long road ahead of us, but we are thankful to be at this turning point.

Following His lead...

Tamara

Day 97. Joy of Joys.

My oldest grandchild, Dana, a girl, carries this as a middle name. The other two are boys, and they simply are as well.

This past weekend was a milestone for me.  I attended my first major "event". We went to my great nephew's birthday party complete with kids' water slide, swimming pool, trampoline, and play set.  A virtual play heaven!  The kids had a blast. I was able to enjoy watching all three of my grandchildren and all my great nephews and nieces play together while the adults mingled and visited. My kind of party.

I wore my sunscreen, capris instead of shorts, donned a hat, and stayed in the shade as much as possible. I am now, and forever, especially susceptible to the sun and skin cancer. Boo!  I love the sun. But you do what you're supposed to do so you can be where you'd like to be.

After the party, Bethany and Kevin had a wedding to attend so we had the opportunity to keep Dana and Ethan. They were busy but wonderful. Tons of hugs and squeals and giggles.  With them recently moved to north of Dallas, I knew this could probably be our last visit until Christmas!  :( They all spent the night, had a leisurely Sunday morning, and headed north sometime before noon.  Wonderful.

We were concerned as to whether or not I could handle that much activity in one weekend with getting sick, but I made it!  We even went and visited Steph and Derek Sunday afternoon after a much needed nap. By Monday, I was one tired girl and stayed put all day. But I didn't get sick. I'd call that a milestone.

We are now counting down the days until this weekend, Day 100, when we go home. We're ready. We are almost giddy!  Paul is putting the final touches on mother's porch and finishing the last few projects she had for him. I'm wondering who she's going to miss more?!  :)

I go back to the doctor on Wednesday to get the results of my bone marrow biopsy. Looking forward to good news.

So it sounds like there's nothing to do but "make a joyful noise unto the Lord!"

Day 92. The Simple Joy of a Shower.

Not since since sometime in April have I enjoyed a shower like I did last night's.  That's because every shower has required being wrapped in Press 'n Seal and waterproof tape to protect my CVC (Central Veinous Catheter).  Monday, Dr. Shah surprised me by ordering the removal of my CVC!  :) Hurray!  So after a 24-hour bandage, we were able to peel that off and enjoy a nice, long shower. Simple joys.

It's been the simple things that I've missed the most.  Not being able to eat raw foods. Not being able to bend down and pull a weed.  Not being able to hug my babies when I wanted. Not being able to sweep the floor.  Not being able to go to church. Needing a nap at every turn.  Having to wash my hands ALL the time. Little things that we take for granted in every day life...eating, energy, medical safety, affection, etc.  I have had to learn to monitor all of these and more. It's not a big deal. It's just a lot of little deals that add up.  However, as I transition home, some of these liberties will be expanded.  Still no gardening!

So last night's shower was a big little deal.