Day -3. The Right Mix of Meds

After a two-day battle of side-effects from the chemo and the side-effect medications, my nurse/doctor team finally found the right mix of meds to handle the severe headache, nausea, and constipation. All I can say is that I'm glad it's under control...for the time being. I needed a break!

Tomorrow is my first day of ATG, a very aggressive immuno-suppressant drug. Don't be surprised if the name of tomorrow's post is "Shake & Bake" since that is what we've been told to expect. :/

For now, for tonight, I think I'll be able to sleep. And for that I am thankful.

"Goodnight room. Goodnight moon.... Goodnight stars. Goodnight air. Goodnight noises everywhere."

Day -5. 12 lbs and Clogged!

How many of you have ever gained 12 pounds in a day and a half? I win! While I have been assured that it's fluid, and my newly pudgy hands are proof, 12 pounds was still a little surprising considering the documented fluid output! For now, the doctor wants to let my body handle it primarily on its own. Glad my pj's flex. :)

I mentioned before I was admitted that some of my in-patient posts might contain TMI. I found reading other transplant patient blogs helpful in preparing for my transplant. I want to provide the same help to anyone who comes after me. It also guides in how to pray.

During the last couple months, the numerous medications that I've been on have caused chronic constipation. It has been somewhat managed by nightly senna tabs. The new meds and new hospital routine have only aggravated the situation.

Not long ago on a particularly difficult night, I requested specific prayer support from a small group of ladies. They jokingly became known as the "poop group"! However, "poop pray-ers" and "poop patrol" were a close second and third. Feel free to consider yourself an official member.

My team of nurses have worked diligently with me on diet, exercise, and natural meds like senna to help get things moving. While there has been some limited success, this stays near the top of my current prayer list. What can I say?!

I have also had a headache each day, with each one being a bit more stubborn and long lasting. Again, the nursing staff has stayed in contact with my doctor and provided the necessary meds.

On the up side, besides having my hubby spend the night last night (as uncomfortable as he must have been), my mom, and my neice, Bridget, and hubby, Craig, came for a nice, long visit bearing gifts of pictures from Tristen and two beautiful Willow Tree angel figurines...Angel of Healing and Courage! :) They make a beautiful and meaningful addition to my Willow Tree Lavender Grace, gifted by Sharon & Tom, and my angel from Cheryl that reminds us to "Expect Miracles". We do. Thanks to all of you who love and pray for us. And thanks to the One who makes miracles happen!

Day -6. Time Flies When You're Having Fun!

The days in the hospital prior to transplant are called "negative" 7,6,5...until we get to Day 0...transplant day. Then we start going up.

You would think that time would drraaaggg by! But if today is a telling example, it's done anything but drag. I hadn't even had time to get a nap!

After being awakened several times during the night (either for vital checks, potty breaks, being too hot or too cold, nearby noises, or the beeping alarms on my own machines), I had good sleep from sometime after 4:30 to around 8am. :)

Since then, I have eaten a good breakfast and lunch, accounted for all ingoing and outgoing fluids, performed my oral care and breathing exercises every two hours, visited with my mom, my tramsplant team, my nurses, two volunteers, and the blood drive coordinator...and took a 20 minute walk around the floor with my mom. We would have continued, but it was time for another vitals check and potty accounting.

It may not sound like a big deal to document ALL fluids in and out, but whe you have four bags of various fluids and meds coursing through your veins, there's a LOT of counting to do!

After they started my Benedryl drip this morning, I thought that I would doze off. But everytime my eyes would close, another beep would sound or another 15 minute span would pass between vitals.

By later afternoon, the vital checks and Rituxan dose adjustments stretched to one hour. Mom had headed home to beat the afternoon traffic. Finally, a chance to catch a few zzzzz's! I also wanted to jot down my thoughts of the day. What do I do first? Write. I may forget if I nap first. What can I say?! I promised to keep everyone posted.

But my eyes are heavy, and I think I'm falling......asleep.

Firsts & Lasts

Today was the last of my pre-transplant tests.  A full ophthalmology exam was in order and I had my first CVC dressing change.  (Paul will probably blog about the humor in these later.  But they were both somewhat unpleasant.)  We learned during the eye exam that GVHD could also affect the eyes, which is why they needed baseline information in this area as well.  We had been told a couple weeks ago that I would not be able to wear my contacts while in the hospital.  They do not want any risk of infection.  What I hadn’t realized is that I won’t be able to wear them for as long as I am on immuno-suppressant drugs, which could be a year or more.  So, even though it wasn’t in the plan, I filled my vision prescription today for a new pair of glasses.  It will be the first time in a long time that I haven’t worn contacts.

The past several days have hung quietly heavy for Paul and me.  There hasn’t been much left to voice.  Just silent hugs.  We have known this day was coming for some time, and we’ve done our best to prepare for it.  We have spent what time we could with family and friends, and we have spent time alone. 

I have washed the towels one last time.  I washed the sheets one last time.  I finished all the laundry, ironed shirts, and packed my bag.  I shopped for some easy to fix foods for when Paul is at home.  I have bought and addressed birthday cards for the next two months.  There’s a lot to think about when you are going to be gone for a month…or four! 

Tonight is our last night at home.  Our last dinner together here.  Our last night to sit on the porch and enjoy its serenity.  Our last night to walk around the pond.  Our last night to sleep side by side. 

For a while.  Then begins a new set of firsts!

The next weeks and months are not going to be easy, but they will be worth it!  With God’s grace, the miracle of medicine, and the gift of stem cells, we will return home for another season of life together and with those whom we love.

Noah’s Ark

A few weeks ago, during one of my post-shot visits with my cousins Al & Bonnie, the discussion landed on my impending transplant procedure.  As we discussed the upcoming hospital duration, Al mentioned that the 40 days and 40 nights reminded him of the story of Noah’s Ark.  I told him that we must have like minds because I had just recently made that same correlation and was already thinking through the many similarities. 

Noah spent time building and preparing the ark to God’s specifications.  He collected the animals by pairs and fowls by sevens and herded them into the boat.  He gathered his family and reached out to others around him.  When God said it was time, the door to the ark was closed and Noah and company were tucked away inside to ride out the storm.  Forty days and forty nights of non-stop rain.  You can imagine that after a couple weeks with that many animals, it had to begin to smell!  :)  “And the waters prevailed upon the earth an hundred and fifty days.”  I can only imagine Noah’s excitement when the dove he sent to find land came back with the olive branch.  It was still a few more months before they could exit the ark onto dry land.  When they did, Noah built an altar of thanks and dedication to the Lord. 

My doctors have spent time preparing my body for the transplant.  Campath reduced the leukemia so that my counts would meet the specifications needed to begin the transplant process.  We have collected the things I will need during my stay.  We have gathered our family for some final hugs and reached out to friends around us.  It is now almost time to enter my ark and begin the 40 days and nights of storms.  Some of it is going to stink.  And there will be another hundred days of care and close observation before we see dry land.  But just as Noah had faith in God, so do we.  Noah had never even experienced rain, much less a flood.  He didn’t know what to expect.  But he knew God.  While we have read and researched as much as we could, we still do not know with all certainty what to expect.  Every transplant is unique.  Every body responds differently.  But we walk forward knowing that God is in control.  And when we emerge safely from this ark, we too will offer our thanks to our Lord.

Whatever happens, weeks…even months on the ark has got to be better than three days and nights inside the belly of a whale!  :)

Sliding In Under the Wire

Wow!  What a ride this has already been!

Wednesday, my mom drove me to MD Anderson because it was going to be my short day, and I wanted her to get acquainted with the drive.  I was just going to sign my consent papers.  Should have been in and out.  However, a meeting snagged my doctor and the wait expanded.  Mother and I spent the time going over all that Paul and I had learned in our classes and thinking through a daily routine for once I’m admitted.  The time passed quickly.  When we were finally called back, the exam room wait was equally long.  Unsure of what was going on, we nibbled on cheese crackers that mother had thankfully packed in her purse.  When a frazzled Dr. Shah finally joined us, she apologized for the delay and told us what was happening.

My protocol is part of an international study.  We had actually researched and hoped to be a part of this study since last fall.  Since my situation has been so unique, we thought it would be useful to have it all documented.   One of the requirements was to have been off chemo for at least three weeks.  The timing of my conditioning chemo, the donor’s harvest, and my transplant had all been based on that.  However, Dr. Shah had just learned that the head of the study had recently changed the requirement to SIX weeks post chemo!  No one at MDA had that information.  It wasn’t on the web version either.  So she had to frantically start working to get an override.  But the head of the study was currently in Europe somewhere and asleep at the time we were busily awake!  She apologetically asked if we could come back early Thursday morning, before my scheduled 10:30 Rituxan appointment, to sign consent papers.  Certainly by then all of this would be worked out.

Shortly after 9am Thursday, Paul and I arrived at MDA and made our way back to Dr. Shah’s waiting area.  After a bit, her nurse, Cathy, came out and said that the doctor was still working on getting the signatures.  Everything was looking good, but it was going to take some time.  We were free to leave the waiting area knowing that she would call and let us know when to come back.  So we took the time to get to know more about the place that I was about to call home for the next month or so.  We discovered that the 24^th floor of the tower where my room will be is an observation area.  Huge windows looking out across the city in all directions surrounded the entire floor.  There were couches, chairs, and tables where folks could sit, relax, do crafts, etc. 

Next we went down to the 17^th and 11^th floors to see the transplant areas.  Half of the 17^th has recently been added because of the increase in transplants.  It’s newer and the rooms are a bit larger.  The 11^th floor is the original transplant area and where the exercise classes and music therapy takes place.  I learned that even if I were assigned to the 17^th, I would be allowed to go down to the 11^th for those activities.  A sweet nurse on the 11^th gave us a little tour and answered a few questions.  Amazing team of people!

We walked back over to B-8 (you get around MDA by elevator bays and floor #’s) to see if there was any word.  Cathy came out and said that things were moving along but we would have time to go get lunch.  So we trekked across the skybridge to the Mays Clinic where the café has an outdoor eating area.  The surroundings were very nice and relaxing, but you have to be careful on your food choices when eating at a hospital.  Some things are ok.  Others, not so much.  We’re learning.

After that, we toured the Duncan Bldg, where Paul’s orientation would begin shortly, and wandered through an excellent exhibit describing the history and purpose of MDA.  We then took the tram back across the skybridge (I was getting a little tired), and Paul left me in Dr. Shah’s waiting area while he went back for his orientation.  About 2:30, Cathy came out to update me on the situation.  Dr. Shah was still hunting down two more signatures.  She was concerned that it could take until 4pm.  While the wait wasn’t the problem, 4pm was the cut off for getting the Rituxan orders to the ATC (Ambulatory Treatment Center).  She couldn’t send the orders until she got the signatures.  If I missed getting Rituxan that day, it would negate my entire transplant timeline!  I immediately dropped in prayer…after texting Bethany and asking her to join me.  I saw later that she had also Facebooked the request as she was sending up her own.  Within TEN MINUTES (is God good or what?!), Dr. Shah was in the waiting area frantically searching for me.  Our eyes connected and she ran me back to the exam room, spit out the pros and cons, asked if I had any questions…no…and we signed the consent.  They took a little more blood, for another aspect of the study, while Dr. Shah handled the last snag.  Since I missed my 10:30 appointment at the ATC, they had to find a room for me that would be available throughout the evening.  By the time the blood was drawn, we had confirmation and they scooted me on my way.  I texted Paul, and he met me at E-6.

After a short wait there, we were taken to a scaled-down hospital room, vitals were taken, and I was started on the saline then Benedryl drip for the next 30 minutes.  They were still waiting to receive the Rituxan.  The orders had to be sent from the doctor to the pharmacy and then delivered to the ATC.  Just after 5pm, they started the Rituxan.  I emailed my research nurse to let her know that we were in business.  She then passed it along to Dr. Shah who later responded, “Yah!  Now I can have a beer!” :)  She earned one.  I don’t know what she normally does on Thursdays, but all she did yesterday was work to get me in.  I am grateful and blessed.

The first dose of Rituxan is started slowly and increased bit by bit to watch for side effects.  During the second increase, the roof of my mouth started to itch followed by my throat getting very sore.  I didn’t realize how sore until I bit into the sandwich that the food service folks had just brought in.  It felt like little razors all down my throat as I swallowed.  It didn’t help that it was the driest sandwich that I have ever had!  Next time I will order the soup!  Again, we have to learn what is best to order….  I couldn’t imagine how I had gotten this bad of a sore throat so fast, so I called the nurse.  She said that it was a side effect to the Rituxan.  So she gave me another hefty dose of Benedryl and hydrocortisone.  Wow!  That stuff worked fast!!  Within seconds, the pain was gone.  Amazing!  Of course, my already tired and relaxed from the first dose self felt the effects all over my body.  I was sleepy and heavy all the way down to my toes.  Because of the side effect, they had to stop the Rituxan for 30 minutes and then start back from the beginning, increasing the doses slowly.  The second run was fine. I dosed off and on throughout the rest of the evening, being startled back to consciousness every time the buzzer on my IV went off and my blood pressure cuff would automatically fill up.  My vitals were taken regularly, and by 10pm the Rituxan drip was complete.  I had to stay another hour for observation (and a nap).  Finally, at 11pm, fourteen hours after our morning arrival, Paul and I made our way back across the hospital to wait for valet to bring the truck around.  You’d think that after 11pm, the wait would be minimal.  However, the drivers were minimal as well, so the wait was usual.  By the time we crossed Houston's barren highways and made our way home, it was after midnight.  I was sure that the truck would soon turn into a pumpkin…or is it the pumpkin that turns into a horse and buggy?  But we made it home safe and sound, crawled under the covers, and thanked God that He had gotten us through the day successfully.

No one said that this journey would not have bumps in the road.  We just have to keep hanging on for the ride of our lives.

Central Venous Catheter (CVC)

The past several days have been spent doing the multitude of tests that are required before a stem cell transplant.  PET scan, CT scan, chest x-rays, EKG, echocardiogram, pulmonary function test, dental exam, eye exam, another bone marrow biopsy, and labs, labs, labs.  We have met with the doctor, transplant coordinator, research coordinator, had a social work evaluation, business center follow up, and attended the “Everything You Ever Wanted to Know about CVC’s” class.  My CVC was inserted yesterday morning and followed by classes on how to take care of it.  By the end of the day, Paul was certified.  So now he can “officially” take care of me.  :)

So…what is a CVC and why do I have one?  CVC stands for Central Venous Catheter and is a tube that is inserted into a vein either in your arm or under the collarbone (as mine is) for infusion therapy.  The CVC has many uses such as infusion of chemotherapy or immunotherapy drugs, blood products, antibiotics, total parenteral nutrition (IV feeding), and other intravenous medications.  It will also be the means by which I receive my stem cells! 

The benefit of the CVC is that I will not have to be stuck EVERY time they need to do something.  Additional CT and PET scans will still require another IV, and some blood work will require additional sticks, but it will definitely cut down on the invasion of my veins.  Generally chemotherapy drugs are very toxic and can cause irritation to the skin, tissues and veins.  Injecting such potent medications into a small vein would allow the medication to leak into the nearby tissues and cause damage.  Administering into a large central vein allows them to be immediately diluted by a large volume of blood and delivered effectively throughout the entire body.

I was a little nervous about this procedure.  Even though I have now had four bone marrow biopsies, the CVC insertion had me a little weirded out!  But it was much less traumatic than expected.  They gave me some relaxing medication and then several doses of local anesthesia.  A “tunneled” catheter was passed under the skin from the insertion site to a separate exit site, where the catheter and its attachments emerge from underneath the skin.  The exit site is located in the chest making the access ports less visible than if they were to directly protrude from the neck.  Passing the catheter under the skin helps to prevent infection and provides stability.  Mine is called a triluminal Hickman catheter, which means that I have three lines.  It is held in place by an adhesive dressing and suture, which is covered by an occlusive dressing.  The lines much be flushed with a heparin solution daily and the caps and dressing changed weekly.  That is what Paul learned and was certified to do.  Mother (and probably Bethany and Bonnie) will learn it as well…just in case.

Today is just signing papers, and all day tomorrow I will receive outpatient chemo.  Please pray that the side effects are minimal.  The past week has been exhausting.  But we are thankful and more and more convinced that we are on the best possible path.  We have never seen our doctor more certain of the same.

We thank God for being with us every step of the way.

The Road Less Traveled

Paul and I have mentioned over the last months that while we have chosen “the road less traveled,” we both have felt a settled peace about our decision.  However, I can now better understand what our doctors shared with us.  They said that others in my situation felt so much better after the frontline treatment pushed the disease into remission that they opted out of the transplant.  We couldn’t understand how folks could be so short sighted.

Now that I am in my third week past the Campath/Neupogen shots, I feel better than I have in months!  I’m not as achy.  I’m not as tired.  I have more stamina.  My appetite is better.  I can see how someone could slip into a false sense of security.

The fact of the matter is that this won’t last for long.  Those who wait until they relapse before reconsidering transplant have to go through a second line of treatment to regain remission.  With each round of chemo or antibody treatments and as the disease continues to wreak havec, our bodies weaken and increase the possibility of transplant failure or difficulty.

I am thankful for the increased energy because there is SO much to do during the next two weeks.  I will be at MD Anderson most days going through one test or five others!  You never quite think of all the things that need to be done when you’re going to be out of commission for an extended period.  I have to write everything down now, and I check my schedule throughout the day to make sure I haven’t missed anything. 

It is also difficult to remember that I am still immuno-compromised.  Since I feel better, I want to do more things…like weed the flowerbeds or go out to dinner.  But both of those are still off the table.  :/

So we will continue on this less traveled road, making sure that the car is fueled up, the bags packed, the route laid out, and the destination is in sight.

Full Steam Ahead

You guys must be some mighty prayer warriors!  A week ago, we were wondering if M-47 was going to even be part of this journey.  As of Thursday afternoon, we found out that we are full steam ahead.

On our way to the country, trying to capture as many moments together as possible, my transplant coordinator called with the news.  M-47 had attended the information session and had gotten his physical!  Not wasting a moment, she had already checked the appropriate calendars and booked the dates for my transplant back through the pre-testing (everything they did last fall will be rerun in order to have accurate baseline counts), insertion of my CVC (central venous catheter), outpatient Rituxan, and hospital admission. 

So here we go!  Monday, as in tomorrow, I am scheduled to go to the dentist (to have everything checked and forms filled out to confirm that there are no oral issues.)  Tuesday, I am going with my mom to shop for pj’s and slippers and then go get my hair cut.  Pre-tests start on Wednesday and go for several days.  Tuesday, April 17^th, I will receive my CVC while under full sedation.  I will sign consent papers on the 18^th.  Then on the 19^th, I will get Rituxan (the R of FBR) as an outpatient while Paul attends a MD Anderson consultation for a quit smoking trial.  We then have a few days to wrap up any loose ends before I am admitted on Wednesday, April 25.  Unfortunately, I will miss my youngest grandson’s first birthday party.  ;(  But the hope and prayer is that I will be here to enjoy many, many more!

During the next days, I will be undergoing the FBR conditioning regimen to eradicate the rest of my cells in order to prepare my body to receive and accept the new stem cells.  At the same time, my donor will receive several days of shots to push his stem cells from his bone marrow into his blood stream to prepare for harvesting, which will be done on May 1^st.  On Wednesday May 2^nd, four days before my 51^st birthday, I will receive my stem cell transplant (SCT).  This will be known as my “re-birth” day.  As a Christian, I have already had one, so I guess this will be my second.  :)

The following 30 days will be spent waiting for my body to accept the new cells and begin to engraft.  There are numerous side effects possible during this time, but we’ll just wait and see and pray for the best.  Each person’s transplant journey is unique.

Once my counts reach a certain level, I will start my 100-day ambulatory outpatient care.  It will begin daily, then every other day, etc. until I reach the level where I can go all the way home.  Many have been re-hospitalized during this stretch of time due to infections and various GVHD side effects.   We’ll see how that goes.

So this weekend, the time we celebrate new life in Christ and new life in our earth, we celebrate the opportunity of new life without leukemia. 

We enjoyed the peace and beauty of our little slice of heaven, drank in memorable moments with my children and grandchildren, and held even more tightly to one another as we prepare to run the race that is set before us.

It was hard saying so many goodbyes this weekend...to our place in the country and especially to my grandchildren.  I know in my heart that this is temporary.  But I will be counting the days until I can again hold them close and share the simple blessings of time.

In all things, in all ways, to God be the glory forever and ever.  Amen.

No News is Good News!

First of all, thank you for the many calls, emails, and posts checking up on the status of my donor.  I just got off the phone with my transplant coordinator and she said that she did not get a notification of him not showing up for his info session, so that basically means that no news is good news!

She also learned that he is not in Europe after all.  His donor # begins with a number typical of those from Europe.  However, he is from a different registry and is actually in the US, which makes all of this much simpler and easier to get the stem cells from him to me.  However, it messes with my and Paul’s plan to travel to Europe in the next year or two to take this guy to dinner!  I guess we’ll just have to swing by his state on the way.  :)

If all is going according to plan, he should be getting his physical today, and Susan (my coordinator) should be able to offer some projected dates of transplant within the next few days. 

Spring, and especially Easter, is the celebration of new life.  How amazingly appropriate for God to time this accordingly!  :)

We ask for and cherish your continued prayers for our proposed US M-47 donor.  We pray that he would be blessed for the offering of life-generating stem cells.  Please continue to pray with us as we wait and prepare for the next leg of the journey.