Days 24-26. An Anniversary to Remember

After three days back in the hospital, I was released on Saturday afternoon, Day 24, to return to my mom's. I was REALLY tired, but it was good to get home. Saturday night was riddled with bone pain followed by having to be at the ATC at 7am Sunday morning, Day 25. The good thing was that the ATC visit was uneventful and I was able to nap most of the three hours. We were back at mom's by noon. Other than a stint with extreme water weight gain from the steroids and continued bone pain, things were looking up.

The next few hours started what has been a delightful holiday weekend. Paul grilled the best homemade hamburgers ever on the face of the earth! Those along with grilled onions, sauteed mushrooms, provolone cheese, corn on the cob, canteloupe, and watermelon made one happy girl. Actually, all three of us were pretty happy! We then packed a small bag and headed to our house for our anniversary "pass". We might have well have been going to Hawaii! It was THAT good to be home. It's been just over a month. I know that most folks in my situation have to wait much longer than that, so I am very thankful...even for our one and a half days.

We spent the first evening watering the plants, visiting with the neighbors, snacking, dancing, and listening to music on the back porch. And there's nothing quite like being back in your own bed, in your own house. Cooking in my kitchen. Breakfast on the porch. Followed by the sweetest anniversary gift of all time.... Paul weeded my flower beds and let me prune my roses (as long as I didn't touch the dirt, wore my mask and gloves, and didn't pick up the pieces). This may sound silly to you, but it was beautiful to me. Later as he taped the Saran Wrap over my CVC so I could take a shower (after the first time actually being dirty in over a month), tears rolled down my cheeks to think of all the ways he has taken care of me.

Tonight he is going to grill portabella mushrooms and goat cheese, and pineapple spears (yum!) that we'll enjoy with cold boiled shrimp, cheese, bread, and a non-alcoholic apple wine that a friend gave us to enjoy for the occasion. (Too many meds for alcohol!).

Tomorrow morning at 7:40am will find us back at MDA for tests and whatever comes next, but for tonight we have our home and the greatest gift of all...another anniversary with the love of our life.

Days 22-23. So...Here's the Plan.

Thursday, Day 22, started with about the same level of discomfort as I came in with. Because I was admitted on a clear liquids only diet, I had vegetable broth, hot tea, and apple juice for breakfast. Four sips of the broth brought a return of the nausea, but I was able to keep down the tea and juice. As far as I recall, my med regimen continued as it was for that day while planning to schedule a visit from the neurological team. By the afternoon, I was feeling better. That was not unusual because I have been having regular highs and lows. Paul worked about half a day and then brought my things up.

Friday, Day 23. If I don't write right away, I have a difficult time remembering what all happened. But here's the gist. Sometime yesterday morning, my rounds team came in and told me that the neurology team would be in later for an evaluation. The plan was to change the plan. They allowed me to get back on my regular diet minus fresh fruits and vegetables, so that was a nice relief. My buddy, Dave, was here having tests so he dropped by for a visit in between. The Neurology Intern came while he was here and did a thorough verbal and physical history and evaluation. The main concern was to get me off the scheduled Maxalt as it can cause rebound headaches at that level and can reduce it's effectiveness, as I had already begun to notice. It originally held off the pain for the entire eight hour stretch. Then the headache was returning after six hours, then four hours, and other pain meds were having to be utilized to make up the difference.

She asked if I had ever used a type of migraine preventative in the past. I had. Topamax. I was on it for years until I took myself off of it after my hysterectomy in '07. The migraines had been greatly reduced since that time.

Later, the Neurology Doctor joined the intern and confirmed the plan to start me back on Topomax a little at a time. It has to be built up gradually. At the same time, they would start me on a steroid to stop the headache cycle. The goal is to get me on a pill regimen that will allow me to go home and keep the headaches under control. They think that if the headaches can be controlled, the nausea will be as well. Here's hoping.

They are also talking about moving me back to the transplant floor, so I guess I am going to be here for another day or so. Paul and I are just hoping that I am out in time for us to have a home day on Monday for an early anniversary celebration. Tuesday, our actual anniversary, will be spent all day at MDA having all the tests needed to see how much leukemia is left and how much the donor cells have engrafted.

I did wake this morning with a headache, and my only option was a small dose of Dilaudid. And for the first time after them checking every day, my hands are swollen. Not sure what that means.

So the prayer requests are that this new plan will work to control the headaches and nausea and that I will get to go home at least by Sunday.

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you a hope and a future."
Jeremiah 29:11

Day 21. Lather, Rinse, Repeat. Or, Back in Black!

As I was getting ready this morning for my daily ATC appointment, I seemed to feel slightly like I did last Friday. Headache that didn't want to go and stay away, an ickier than normal tummy, temporary rise is heart rate, and just a little extra tired. But I chalked it up to not sleeping well last night, took another pill, and went on my merry way.

Sister-in-law, Julie, was my care driver and we were both hoping for an uneventful day. Blood work went smoothly, and she actually had to keep up with me on the trek between the lab and ATC. We had a bit of a wait there, and I was wishing it had been time for another pain pill, but I had already taken my limit and had more two hours to go. By the time we got to my ATC room, I could tell that it was going from bad to worse. :/

My lunch came and Julie opted for the wider variety found downstairs. No problem. I'll be here for another three hours. So I tried my best and nibbled on some cottage cheese, canned fruit, and crackers. I wasn't able to get much down when a repeat of last Friday began and I lost everything...which made my head hurt worse, which made me lose what I now didn't have, which made my head hurt worse.... This continued on until the order to pharmacy could be filled. I think they gave me Ativan and a dose of Dilaudid, not any too soon.

This time it didn't work completely. When we all thought I could try to go home, it started again. The doctor said to take me directly to ER. (No need to drive home in misery just to drive back!). I don't remember much about my time in ER. I know they gave me a couple really good IV meds and I got some much needed sleep. I didn't realize just how much until I heard the doctor say they were admitting me. The clock read 12:35. 12:35?? Wish it had the day and am/pm on it because I had no idea. It was thirty minutes after Midnight! I had been asleep for a long time. Paul, however, had been awake for almost 22 hours, having woken with the worst headache of his life resulting in throwing up before heading to work! Please pray that he finds relief soon!

After being wheeled in my bed to my hospital room (no, I don't really know where I am other than the leukemia floor), the team got me situated, forms signed, instructions read, and declared that I am now on a clear liquids diet. Hard to put on weight that way!

Paul went to mom's to get some sleep and to re-pack my things so he can bring them back in the morning. (For those who come after, I was supposed to always have a bag ready. I did 't. :/ ) The plan, as far as I understand it, is to work with the pain management doctor utilizing IV to get me comfortable and them determining a pill regime that will work before sending me back home. Please pray that it can be figured out quickly because we had just been approved for an "our home" visit to celebrate our anniversary a little early.

Fall Report and Prayer Request:

Mother is healing more everyday from her fall, but the doctors are still working toward a cause.
The morning before my mom fell, my Aunt Polly fell in the garage and broke a rib. Please pray for quick healing and reduction of pain.
A couple days later, our long-time friend from Pineview Bible Chapel, Ms. Virginia, fell face first coming back into the house, with no bracing. She broke her nose, there has been bleeding in front of the brain, they had her in a med-induced coma (out now), and are now waiting to go home before beginning physical therapy. This is going to be a longer recovery.
Aunt Polly's best friend, Sue (85), fell on Tuesday. She broke several major bones in her leg. Her heart is not strong enough for surgery, so they will be installing a pacemaker so they can put the necessary pins in her leg.
Yesterday, my Aunt Dottie fell outside and broke her hip. She had surgery yesterday afternoon, and my cousin relayed that the surgery went well. She, too, will have to go through physical therapy.
Please pray for all these sweet ladies. I thought this season was called Spring...not Fall! Five falls in less than two weeks. :(

So here I am in the wee hours of the morning writing before I forget. Poor Julie did not get an uneventful day after all, but I appreciate her being with me. Please pray that this will be a short, productive visit at hotel MDA.

Time for a nap.

Days 19-20. Meds, meds, and more meds!

It all comes down to a balancing act. Trying to find the right mix of meds to counter the side effects of the other meds. For now, it's still a daily adjustment.

Vfend (voricomazole) is an antifungal and must be taken on an empty stomach.
Valtrex (valacyclovir) is an antiviral that replaced the Valcyte I was taking prior to transplant. The Valcyte also fought against the dreaded CMV virus, but it interferes with my GVHD meds.
Bactrim DS, an antibacterial that I took pre-transplant, is also on hold because of the same reasons.
Prograf (tacrolimus) fights against GVHD. My levels are checked through my bloodwork three times per week and the dose is adjusted accordingly. There's no just taking the amount printed on the bottle. It changes every other day...at least for now.
Ultram (tramadol) helps with my bone pain caused by busily reproducing cells and the occasional Neupogen shot.

One of the side effects of all these meds is headaches. Since I already had a propensity toward migraines, this has been a daily battle.
Maxalt (rizatriptan) keeps the migraines in check and is taken every eight hours at 6am, 2pm, and 10pm.
Oxycodone plays backup to the Maxalt for when the headaches come back before the eight hours are up.
Flexeril plays backup to that.

The other side effect is intestinal distress. GVHD can also cause it, so it is important to know which it is.
The very common Pepcid (famotidine) is taken daily to try to ward off some of the stomach upset.
Reglan (metoclopramide) is my daily friend to overcome the nausea. Most cancer patients take Zofran, but it severely aggravates my headaches.
If the Reglan isn't enough, Ativan (lorazepam) comes to the rescue but at the cost of being awake.
If all else fails on all fronts, Dilaudid (hydromorphone), a pain med 10x stronger than morphine, comes to the rescue and knocks me out until all is better.

All of these meds cause me to have constipation. So we are continuing to look for the right balance of Senna-S, Miralax, and Benefiber. When these are not enough, Lactulose does the trick...but at a great cost! There's no leaving the house after that one.

Monday, Day 19, my labs showed that I had a urinary tract infection. I asked if I had done something to cause it, but she said that it is simply the state of my weakened immune system. I will tend to catch any stray bug floating by. Thus the importance of my mask, lack of crowds, and all the other precautions. So back to the MDA Pharmacy I went for Ampicillin, an antibiotic, to add to my regime four times a day for a week and must be taken with food. Please pray that the infection would heal quickly as these are the types of things that can cause set backs.

Tuesday, Day 20, the doctor and APN (advanced practice nurse) decided to start me on the pill form of Magnesium Oxide, which also has to be taken with food. I have been receiving it daily as part of my IV fluids. They will slowly build up the number of pills while reducing the amount of IV until it too has found its balance. This is also a step in weaning me off daily visits.

They will begin the weaning process by giving me Thursday off. I will bring home a portable pump so I can administer my IV fluids at home. :) If that goes well, I may get the weekend off too!

Other than dealing with the headache and intesinal issues, I have not had any more significant events since the weekend. For that, I am very thankful. Please know that your prayers are playing a vital part. I am daily overwhelmed by the oupouring of love and care by my drivers, meal providers, grocery shoppers, note writers, and prayer partners. We are truly blessed!

Today, my dad has been gone 15 years. I know that he is up there manning the heavenly prayer warriors. While I look forward to the day of seeing him again, I am so glad that this miraculous transplant will postpone that reunion for a while longer.

Here's to this crazy bunch of meds that plays its part in this journey of ours.

Days 13-18. ATC, Easy as 1, 2, 3. ATC! Oops, nope!

(I started writing this post Friday morning. Wasn't expecting to have to make such drastic additions and changes....)

I'm sure that the Jackson Five didn't quite have that in mind when writing their ABC song.... Since being discharged on Monday, I have spent the majority of each of the next days in the ATC (Ambulatory Treatment Center). The drill is the same. I start with labs, which they fortunately still take from my CVC so I am not getting poked everyday (except on M/W/F when they check my Tacro levels). Then I go sign in at the ATC, get my vitals and weight checked, get my room assignment, hop on the bed, appreciate the newly delivered warm blankets, and wait for the nurse to hook me up to my pole holding three hours of IV fluids. During the three hours, I see either the advanced nurse practitioner or the doctor. They get the results of my labs and determine if I need anything else (like magnesium, potassium, blood, or platelets). So far my numbers have been perfect and I haven't needed anything except the fluids (which they continue to give to protect my kidneys from damage from all the meds). I take a nap, eat lunch, and visit with my daily care driver. I am usually gone for at least six hours.

What a blessing each of these people have been! This week I have been blessed by my Aunt Polly, my business buddy Dave (please continue to pray for him as he enters a new trial at the end of the month), my Aunt Dottie, and my friend Renee. Aunt Polly took another day to grocery shop for us since my mom is still recuperating from her fall. She is doing much better, but the doctor's are still working toward the root problem.

This weekend, my Bethany is coming to care for and spend time with us, giving Paul a bit of a break. Sweet Sarah & Alan Przybyla are providing dinner for us on Friday, I continue to receive notes, calls, and cards of prayer, support, and love. God is working through each of you to encourage and provide.

1 Corinthians 12:4-6
"There are different kinds of gifts, but the same Spirit distributes them. There are different kinds of service, but the same Lord. There are different kinds of working, but in all of them and in everyone it is the same God at work."

Because my numbers had been so good, I had been given a weekend pass. They were going to send home my fluids with a portable pump. Then came Friday. I didn't feel as well from the start of the day. Hadn't really slept well, felt extra tired and...slow. When Renee and I arrived, there was no delay in getting my labs and we got to the ATC a little early. Vitals and weigh in indicated that my blood pressure was a bit low (maybe that's why I felt so tired) and I'd lost the pound I'd managed to gain. It took a while to get my room assignment, but when we did the nurse came in announcing that my potassium level was elevated and that I would have to drink these two bottles of stuff (Sodium Polystyrene Suspension, tasting like disgustingly sweet caramel liquid sand) and have an EKG. Goodness. Who would think that elevated potassium would be such a big deal!

During this time, my headache had begun to increase and my regularly icky tummy was progressively getting worse. The disgusting caramel suspension didn't help. By the time our lunch was delivered, I was to the point of not being able to get but a few bites down, which probably ended up being a good thing. The potassium reducing drink I consumed earlier was supposed to make me go to the bathroom. Well, my constant companion, constipation, was not helping the cause. Finally, the caramel liquid won. The rest of the day was mostly a blur of headache, nausea, mixed with trips to the bathroom. Poor, sweet Renee did not get the same calm experience that my other care drivers did. She did all the things a mother would do when her child was sick. Rubbed my back, brought cool cloths, emptied trays, grabbed trash cans, and prayed over me. Thank you, Renee, for taking such sweet care of me. There were a variety of drugs being added to my IV. I have no idea anymore what they were. I just knew I wanted it all to stop so I could go home.

This time a wheelchair ride was necessary to get to the truck, and it was a good thing that I took the puke tray and a cloth with me as they were used all the way home. Paul had to carry me from the truck. Several more hours were spent on the couch with similar results. One of the listed reasons for going to the ER during this time is when nothing can stop the nausea. Some time around 10pm, my Bethany carried me to the truck and Paul hauled it through town back to the MDA ER. Most of that is a painful blur as well. More drugs, more tests (CT, x-rays, etc.), more headache, more nausea.... We "slept" off an on waiting for various drugs to take effect. They ended up giving me dilaudid, which is supposedly ten times stronger than morphine. That worked. Of course it knocked me out as well. About 12 hours after arriving, I was conscious enough to be wheeled back out to the truck and go home.

After a while, Bethany made the best scrambled eggs and biscuits I've ever had! It was the first meal that has tasted good in ages. Once it was clear that I was out of the woods, Paul went home to hang out with Nathan for a while and get a good night's sleep. Us three girls watched (and napped through) a musical, played cards, ate supper (by then I could only handle jello), visited, and got to bed early. At least I did.

Today, Day 18, Bethany is taking me to MDA for my daily ATC visit. I didn't get my free weekend. Maybe next week. As I have tried to do, I will continue to take one day at a time.

Please continue to pray for the headache and intestinal issues. They seem to be my constant reminder that I still have a ways to go. Please also pray that my potassium levels stay good! I did get the wonderful news that I can now have oranges and melons (that are whole and we peel ourselves). I'm going to have a fruit party as soon as I feel well enough.

I still tire easily, but each day brings new strength.

Isaiah 40:31
"But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not faint."

Day 11. Started Rough, Ended Well. Day 12. We're Outta Here!

On Sunday, Day 11, Mother's Day, the headache and nausea had again increased. The morning and most of the afternoon were spent trying to get it under control so I could enjoy my visit from Josh, Ky, and Caleb and my Skype visit with Bethany and Dana later.

Fortunately, Marla, the wonder nurse, was assigned to me my last full day in the hospital. She worked diligently to find the right mix of meds. We did, however, learn one thing. I cannot take Oxycodone on an empty stomach. I don't remember everything, but I do remember another round of nausea and having severe shakes. Boost Plus to the rescue...and a note to self!

Since I had been recently given multi-floor privileges, We were able to visit with Josh, Kylee, AND Caleb by going up to the 24th observation floor. There are no patients on that floor, so Caleb could go there. It's just for visiting. It was indeed a treat to see my little buddy since I had prepared myself to not be able to be with my grandkids for possibly months! Later, I got to Skype with my girls and enjoy the cards and pictures they had sent. All in all, not a bad Mother's Day, considering....

Day 12. Paul stayed the night with me so we would be ready at anytime to head home, to my mom's. Plus, he was scheduled at 9am to be certified on changing my CVC dressing. He's a natural. We untaped all my cards and pictures to save for my scrapbook, wrapped my new angel collection, packed our clothes, books, notebooks, iPad, digital frame, all the things I brought to make my home away from home a little more homey, and waited for the doctor, nurse, and pharmacist to complete their discharge routine.

I hadn't been outside in almost three weeks. What a simple blessing. It was an even bigger blessing that it hadn't been the expected 5-6 weeks! We give God all the glory for the amazing way my body has responded to the treatment so far. My nurse said that she has only seen three others do as well as I have.

I am convinced that our healing can bring glory to God and point others to Him.
John 9:3b "...but this happened so that the work of God might be displayed in his life."

"To God be the glory, great things He has done.
So loved He the world that He gave us His Son.
Who yielded His life, an atonement for sin,
And opened the life gate that all may go in."
Fanny J. Crosby

Day 11. Happy Mother's Day. A Poem for my Mama.

MAMA

The memories of my mama are more than I can name,
But I think the least that I can do is try all the same.

Mama is a pretty lady; always has been.
Her blue eyes were only for daddy, no other men.

Our home was always perfect, tidy as can be.
She taught me very young how to vacuum, dust, and sweep.

Mama ironed everything, down to daddy's handkerchiefs.
She taught me to iron, probably to keep me out of mischief.

Mama was always in the kitchen preparing wonderful meals.
We had three squares daily prepared with love, care, and squeals.

Mealtime was family time all along the way,
Sharing food, dessert, and the events of the day.

Mama sewed all my clothes until junior high.
"Stand up straight, don't sway your back, hold your shoulders high.

She sewed for me, for Barbie, and for Chrissy, too,
And was sad when I found the gift a little bit too soon.

I helped Mama in the kitchen by setting the table and pouring the tea.
Later she taught me to shuck the corn, make a crust, and clean and snap the beans.

I watched my mama take care of our home,
Take care of my daddy, rarely leave me alone.

I watched her exercise to Jack Lalanne,
And twist on her Twister board to stay in shape.

She watched her shows and ate cottage cheese.
She taught me manners and to always say please.

I can still see her smile and hear her giggle
When daddy would nuzzle her neck and nibble.

Mama always drove me to school, just to be safe,
Then enjoy milk, cookies, and a chat for an afternoon break.

When Ron was old enough to watch me the few times they'd go out,
We would trick them with a belt snap, a scream, and a shout.

Mama would come running as fast as she could,
Saying, "Don't hurt my baby," as if he ever would.

When I was sick, she would run her slender fingers through my hair.
Even now, all grown up, no other can compare.

I didn't know 'til I grew up that Mama always watched
As I'd walk to Kay's or to the store, only a couple blocks.

Mama was always at my recitals, concerts, and plays.
She was my biggest fan, forever and always.

Mama liked to get dressed up and go to Dean Goss or The Windmill.
She taught me to appreciate the special times that were always such a thrill.

Mama taught me grace and beauty and things of elegance;
Yet she loved the lake, the boat, and having lots of fun.

This quiet lady wasn't always quiet.
She could fuss with the best if we were making a riot.

But Ron would just pick her up and carry her out the door.
She'd be giggling and wiggling; his trouble was no more.

I couldn't pull that off, so I just got stuck
With a spanking after church for rolling my gut.

Mother quizzed me on spelling, on math, and on history.
She wanted me to work hard and be all I could be.

She taught me the importance of doing for others,
To go to showers and weddings, write thank you's, send flowers.

We talked about boys and she told me her secrets,
Shared her heart when she thought I might need it.

She taught love of family, both near and far;
To spend time together wherever you are.

She showed the love of God in her own gentle ways,
And taught me to trust Him all of my days.

I watched her pick up the pieces of her broken heart
And work hard to be strong when falling apart.

Years have now passed. She loves her sweet babies who came from her own,
And multiplied joy to watch how they've grown.

Mama became Mama O to all her little ones.
But for me, she's always Mama, the very best mom.

I love you, Mama.
Happy Mother's Day!