Goals and Gladness

It’s funny how time changes when everything is centered around one goal.  Mom and I had to look at a calendar yesterday to figure out what day it was.  We needed to know yesterday was Thursday, not 48 hours till chemo bag removal, not nineish days until I need to shave my head, not 3 days until my growth factor shots begin.  But that is the positive:  we have goals to meet and they will be met with a positive attitude and gladness in my heart.

Even though my journey is relatively new, I’ve met some amazing people here.  I’ve spoken with myeloma survivors of 15+ years.  These survivors have been with Dr. Barlogie for the whole of their treatment.  If you look up the statistics online, multiple myeloma patients are not typically given that kind of goal.  It’s expected here, though.  You can see it in the survivors faces, in the way you are treated by the incredible nursing staff, by the no-nonsense manor of my doctor. He will cure me, he says.  That’s the goal.  No questions asked.

So while chemotherapy is making me a little ‘muddy headed’ and not feel that great, I am positive where this journey will take me.  I have about 8 more months of living between Oklahoma and Arkansas this year.  After that, then 3 years of maintenance chemotherapy and bone strengthening at home with approximately a months worth of testing in Arkansas each of those 3 years.  Then my time shrinks to a week spent here each year, then I will have yearly blood tests to make sure my monster is truly gone.  That’s my goal.

That is my goal.  That and making sure that every day is lived with gladness in my heart.  Gladness that I’ve found a place that makes me know I’m a part of the big picture.  The goals being accomplished at the Myeloma Institute for Research and Therapy are changing the outcome of this nasty, nasty cancer.  Something I can be crazy proud of!

‘May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in Hope.’  Romans 15:13

The Abiding Comforter

Since the very beginning of this diagnoses, I have felt secure and comforted.  I’ve had an overwhelming sense that I will make it through this, and that the grass is greener on the other side.  Many people have asked me how I’m dealing with the pressure of knowing I have cancer, and a very dangerous one, at that.  Knowing that I have to spend so much time away from my family, worrying about them while undergoing chemo, losing my hair, etc.  I answer the same way each time, “I just know.”  As silly and naive as that may sound to some, it sounds strikingly clear to me.

I couldn’t put my finger on why I was so confident in this feeling until I received a wonderful letter from my dad.  It’s a letter from his dad, Bill Sr., that was found among his possessions after he passed away.  I felt so strongly that it needs to be shared, so I immediately asked if he wouldn’t mind if I put it on my blog.  I hope it opens more eyes than just mine.  The letter is beautiful.  Beautiful.

A Testimony for My Family

“Each of you have heard the term “The Abiding Comforter.”  You have heard it mentioned many times from the Pulpit of our church.  You are also familiar with our belief in the Trinity, “The Father, The Son & The Holy Ghost.”  It is this
“Abiding Comforter” that I would speak to you about.

John 14:26 states, “But the Comforter, which is the Holy Ghost, whom the Father will send in my name, He shall teach you all things.”

John 15:26, “But when the Comforter is come, whom I will send unto you from the Father, even the spirit of truth.”

The passage I really love, John 14:16 states, “and I will pray the Father and He shall give you another Comforter that He may abide with you forever.”

In each of these verses, Christ is speaking.  Like you, I had heard of this Comforter, but perhaps through lack of understanding did not worry about it one way or another.  The Father God, the Son Jesus I took into my heart very seriously, but the “Holy Spirit,” “The Comforter,” I passed over I guess.

Many years went by and during these years I feel I grew closer to God, and learned to love Him in a way that was warm and comfortable.  My feelings for our Father and our Savior Jesus the Christ was not one of fear, or distant personality, but one of love and realness and closeness.  God and the Son were with me each minute and each hour of every day & night.  Then I realized that I was witnessing the presence of “That Abiding Comforter” that will dwell with me forever, if I permit it to.

I am here to testify to you that this is the greatest feeling a person can have.  There is nothing too big, too dreadful, too complex that you cannot face.  This does not mean that from this point on everything will be rosy.  It means this to me though, I can face these things whatever they might be because the “Comforter” is with me.  To share the burden with me, To give me that strength that’s needed, To tell me everything will be alright, To let me know each day of my life that God is with me and loves me.  Most important that the Abiding Comforter will not leave me as long as I believe in the Father, the Son & the Abiding Comforter.

It is my sincere prayer that each of you will receive the Holy Ghost, that Abiding Comforter to be with you.  It is the greatest feeling, Pray the Father that you receive it, Christ says to you then, “Peace I give unto you, Peace I leave with you.”  And I will pray the Father and He shall give you another Comforter, that He may abide with you forever.”

This testimony, like all testimonies, is a blessing.  Testimonies touch our soul because of the truth of the Spirit behind them.  That Spirit has comforted me tremendously.  As I continue to lean on the Abiding Comforter, my hope is that my family and friends will as well.

Patience is a Virtue

It’s been one heck of a week around here.  I feel like I’m being called to write a blog topic that’s very close to my heart, one about the Holy Spirit being the Abiding Comforter, and I will.  I’ve had so many ask for progress reports, though, so we will start with that today.  Hopefully, I can get the magical blog out tomorrow.  And it will be magical!  The Abiding Comforter always is, to me anyway.

Last Friday I had a ‘minor’ surgery that ended up being anything but.  Dr. Barlogie wanted to excise an axillary (armpit) lymph node that has been plaguing me for years.  I’ve already had TWO surgeries on this lymph node that were unsuccessful.  It’s a slippery little sucker;)  Seriously, it’s slippery!  Every time they lift my arm on the operating table it slides under my chest muscle.  Sooo, what does that mean?  It means that they dug and dug and cut and cut and pulled and pulled and yanked and yanked until they finally got a good enough hold to get that lymph node out.  That left me in super bad shape.  Super.  Super enough that I got to hang out in the hospital for two days getting intravenous Dilauded every hour.  Not fun peeps.

During that surgery I was also given a fantastic permanent accessory called a Central Venous Line, or CVL for short.  This is a direct line into my chest via 3 tubes.  No more shots, no more IVs, no more blood draws for me!  Seriously, this is AWESOME!  It looks gnarly to have a hole in your chest, but it is AWESOME.  They are over the top infection control with the CVL, though.  I had to have the covering changed yesterday, and they wouldn’t even let me watch what they were doing because they didn’t want me breathing on the site!  This makes mom a little nervous since she is the one that has to flush the line every once in a while.  She took a class at the hospital yesterday so she wouldn’t accidentally kill me while doing it.  Poor mom doesn’t much like my sense of humor;)

I met with Dr. Barlogie again on Monday.  I was supposed to start my test dose of Velcade (chemo drug) on Monday afternoon, after our doctor’s appointment.  Once again, I got the frustrating news that we would not, in fact, be starting that afternoon.  His first reason was that my surgery was just too invasive.  I needed time to heal, and while a test dose is very low chemo, he didn’t want to start me on anything until he was confident there would be no infection.  His second reason was a bit more difficult to swallow.  He found evidence of something ‘suspicious’ in the node they removed.  This will require more testing, more sitting and waiting.  What a bummer.  We won’t have any more news on what the something suspicious is until next Wednesday, and my test dose of Velcade has been pushed to Tuesday.

The rest of this week has been plenty eventful.  I move out of the apartment that I’m in at the end of this month, so we’ve been shopping for new living space.  I think we’ve found a new place to live, and they should be able to accomodate us for the entire 9 months!  This is a HUGE burden lifted.  Speaking of places to live, I’ve been asked for my new address many times so I will add a new page to this blog with the information.  We’ve also been spending this time applying for co-pay assistance through several charities and patient programs.  I had no idea how many wonderful organizations there are out there.  I think I’ll create a page on this blog that lists them for people wanting to donate to cancer charities.  It’s so important, friends.  The cost of being diagnosed with something like this is astronomical.  Not only for me, but for my care giver as well.

Speaking of care giver, I’ve got an awesome one!  She gets a little mini break this weekend while the hubby and kids come to visit me.  Bill is coming up, too, so they will have a nice weekend getaway.  It’s supposed to be a beautiful weekend so we will visit some of the local parks and museums, maybe even the Zoo.  Then Lee gets to go with mom and me to the hospital to see how my CVL gets flushed and be there for my test dose of Velcade on Sunday.  I’m sure he is SO excited!   I’m just excited to see them…I miss my family.

That is all for this week.  Sitting and waiting seems to happen quite a bit in the cancer world, but I would much rather sit and wait than jump into something that threatens my life just because I wanted things to hurry up.  It’s time to be patient!

More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope,’  Romans 5:3-4

Good Times….

My first official day of living in Arkansas turned out to be more eventful than I originally anticipated (or less eventful, depending on how you look at it).  I woke up thinking I was going to have two biopsies, then be able to come home to rest.  I’ve been getting crazy tired lately.  I was really looking forward to that rest!

So, I get to IR (Interventional Radiology) this morning with an empty stomach.  Apparently, you need an empty stomach if a doctor needs to poke your chest full of holes. It always makes me a little cranky when I don’t get some protein in my belly, but the nurses in that department immidiately made me happy and relaxed.  They went out of their way to help me and be pleasant.  You know when you can tell that people really like their job and believe in what they do?  That is what it felt like in IR.  Happy, good people.

So, they got me hooked up to an IV, and then wheeled me off for the first biopsy.  Once again, it was conscious sedation.  Did it work this time?  Nope!  I give up.  Conscious sedation just wasn’t meant for me.  Oh well, I had another great conversation with the doctor punching holes in my chest.  Good times!

After that biopsy I was ‘escorted’ by wheelchair to the next department.  I really can’t say anything pleasant about that area of the hospital.  They weren’t very nice, they didn’t let me eat (it was now 2ish.  I’d had nothing since 7pm last night), and the doctor took out my IV very roughly and neglected to apply pressure so I gushed blood every where.  Again, good times!  To make it even worse, after talking to mom and me like we were dummies, he informed me that I wasn’t getting a biopsy today, but having a full blown excisional surgery tomorrow.  Full blown surgery…TOMORROW.  Ugh.

I’m not thrilled about tomorrow.  All I can think of is how fragile my spine, ribs, shoulders and sternum are right now.  The doctor did NOTHING to alleiviate my concerns.  He actually agreed with me that broken bones were a possiblity, but that he’d do his best not break me.  He compared me to porcelain, but then said, “even porcelain gets broken sometime.”  Nice, doc.  Real nice.

So, if you read this before noon tomorrow, say a prayer for no broken bones!

‘Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.’  Mark 11:24

My Life: The Next 9 Months

I’ve known for four days what my immediate future holds.  You would think that in those four days I could have found the time to write a short little snippit to share this bit of news, but I was able to come back to Oklahoma over the weekend.  That means I got to come home with my kids.  That means finding clothes, shoes, fixing hair, breakfast, playing dinosaurs, reading books, teaching the importance of not stealing from little brother and then the importance of not lying about it or anything else, etc, etc.  It also means quiet time sitting on the couch cuddling, and both kids having a special ‘spend the night sleeping with mommy’ evening all to themselves.  I’m so grateful that I was able to come home.

Unfortunately, barring anything unforeseen due to the weather, mom and I drive back to Little Rock tomorrow to begin treatment.  Actually, more biopsies and treatment.  Yes, more biopsies.  I HATE biopsies.  So, why do I need more biopsies?  Let’s start with my doctors appointment last Friday.

After a week of testing I finally met Dr. Barlogie.  All week long nurses would ‘warn’ me not to let my first impression of Dr. Barlogie scare me away.  Had I not already seen the YouTube videos of him, I really would have been annoyed at how often this happened.  I have seen those videos, though, so I can understand how some people are concerned that this man is going to be their leather pants and chaps wearing, motorcycle riding, ears pierced and jewelry adorned doctor.  AND that he is THE world renowned myeloma doctor.  He is all of the above and more.  He almost made me cry within the first two minutes of our meeting because I questioned one of his testing techniques.  I need a stronger backbone.  (Literally.  My thoracic and cervical spine is filled with lesions.  Something my tests done in OK did not tell me.)

Dr. Barlogie tested every system in my body.  The great news in that is most of me is perfectly healthy.  That tells my ‘team’ that they can do a mountain of things to me, and I should be able to take it.  That means they will be able to place me on the TT4 (Total Therapy 4) Protocol.  TT4 is a clinical trial of eight chemotherapy drugs.  EIGHT.  They will be able to give me human growth factor shots for two weeks so that my body will start producing stem cells in my peripheral blood to be harvested.  That means I will potentially produce enough stem cells for 4 or 5 transplants on my own!  It also means that this process will take approximately 9 months.   Way more than 10 weeks.

Yup…nine months.  That’s an entire pregnancy.  I start on Thursday with ANOTHER biopsy of my chest so that he can do genetic testing on the plasmacytoma.  Then I start chemo on Saturday.  Somewhere in that time I will have a port inserted into my chest so that I’m not constantly having to be stuck with a needle.  After two weeks of chemo, I start the human growth shots.  Within three weeks I should have produced enough stem cells for harvesting.  Then I’m done and am allowed to go home for two weeks.

After my two weeks home I come back for four to 5 weeks for my tandem stem cell transplant.  I’ll also start another round of chemo.  Then I come home for 3-4 weeks, then go back for chemo.  Then come home for 6 weeks or so, then go back for 3 weeks for chemo.  This pattern continues for approximately 9 months, but up to a year.  At that point I will be in remission with a true shot of being CURED.  I’ll then be on weekly chemo for maintenance of up to 3 years.  But again, I could be cured, friends.  My eyes are on that prize.

The process will be exhausting and painful.  I will be sick, sick, sick.  I will lose my hair.  My body will be pumped full of poison.  It will affect our finances, test our patience and be hard on our children.  But this, too, shall pass.  What doesn’t kill you DOES make you stronger, it already has.  We will all grow in this, and come out on the other side better people.  I truly believe that sometimes it takes the worst to make the best possible.

As always, thank you for all the love and support given and shown to my family.  Please continue to pray for the big and the small things.  Keep my husband and kiddos in your prayers, not just me.  Pray for my mom, my ‘primary caregiver’, that she has patience to deal with me and my doctors.  Pray that she can hold her bladder while I have a procedure done (HA!  Sorry, mom, I couldn’t resist!)  And that she stay healthy, too.  And lastly, on this World Cancer Day, say a prayer for anyone you know fighting this nasty disease.  Say a prayer of thanks for anyone you know that has SURVIVED this nasty disease!

I’m ready for my 9 months to start.  As a mom, it’s easier for me to put it in the perspective of a pregnancy.  It took my body 9 months to create a baby.  It will take me 9 months for my body to reboot, kill this disease and birth a new, more healthy me.  I can do this.  I WILL do this.

‘But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.’  2 Corinthians 12:9