If Your Body Is Telling You Something, Listen.

I meet people on a daily basis that have questions about my disease. Some of them are afflicted by myeloma themselves, and some of them are just curious. I will talk to anyone about this. I believe that there is someone out there that will hear my story and remember it, when sometime in the future, they start to notice changes in their own body. I wish I had known about myeloma. I wish 4 years ago when I started noticing changes I could have put my own puzzle pieces together to not only see the big picture, but the RIGHT picture.

The first question I’m asked by every myeloma patient or caregiver I meet is, “How were you diagnosed?” or “What were your first symptoms?” This is basically the same question. You see, for someone like me myeloma is SO hard to figure out. And sadly, this waiting time can mean life or death. Life or death. This disease can take people in a matter of months. Early diagnosis saves peoples lives. But when you are a 35 year old white female nutrition coach, myeloma is the LAST thing a doctor will look for. Yet, being here at the Myeloma Institute for Research and Therapy, I’ve met so many of us that don’t fit the myeloma mold AT ALL. We are so fortunate that something happened to alert our doctors. Yes, I’m incredibly fortunate that I broke two ribs within a month of each other, then a few weeks later broke my sternum. If that had not happened, I probably would not be diagnosed today.

However, those bones would not have broke had the correct tests been run. I want everyone to know that I do not blame my doctors at all. Again, women my age don’t get myeloma, so it wasn’t even on the radar. My message to you is LISTEN TO YOUR BODY. If your gut tells you that the professionals are wrong then keep insisting for more tests. Doctors will tell you to keep off the internet, that it can make you a hypochondriac. This is your life. Use Google.

4 years ago, after the birth of my son, I started having pain in my joints, muscles and skin. I went to a wonderful Internist who sent me to a Rheumatologist. My Rheumatologist scheduled so many tests. In the beginning he was sure I had an autoimmune disorder like Lupus. My blood tests painted a picture of a perfectly healthy person except for a high level of calcium in my blood and a very high inflammation marker. I spent months with this doctor trying to figure it out when he finally diagnosed me with what I thought was a bogus disease. I just KNEW he was wrong. I went back to my Internist who then sent me to another Rheumatologist. I was with her for several years. During that time she diagnosed me with another disease that sounded like it could be right, but my gut was still telling me there’s something not right. I was still plagued with pain.

Later, I realized that what I felt wasn’t your typical autoimmune or muscle pain. What I was feeling was bone pain. It was all over my body, but I could point to a spot and say, “It’s right here. If you touch this spot on my hip, there’s pain right there.” I had spots like that everywhere. On my scalp, my hips, my shoulder, my clavicle, my spine, etc. Full body pain, to a doctor, says something like fibromyalgia. Unfortunately, those ‘spots’ were actually lesions on my bone. Lesions that DO NOT show up on XRay or MRI.

I eventually stopped complaining. I feared my doctor probably thought I was making stuff up, and I even got to the point where I suspected she thought I was drug seeking. But the pain didn’t go away. And I knew something was very very wrong.

Who knew you could be so very sick and look like the picture of health? When my ribs broke it took 3 different sets of XRays to show the break. Had I not kept insisting that the pain was severe, my doctor would have stopped at one XRay. When my sternum broke, it didn’t show up on XRay either. Again, I kept insisting something was wrong. So wrong that I finally went to the ER and demanded a CT of my sternum. Finally, after 4 years of frustration, we had a glaring picture of what was happening in my body.

I will never forget the PA coming into the room with a picture in her hand and a very concerned look on her face. She sat down on the bed and said, “Your sternum is fractured. Unfortunately, the fractures are being caused by a tumor in your chest.” Dumbstruck. I asked her what that meant, was she telling me I had bone cancer? She told me that for my age range, and the fact that I’m female, it’s probably breast cancer. Who would have thought that I would be more correct? I knew it was serious when she said, “I’ve already called your doctor to come talk with you. He’s leaving his son’s basketball game.” I told her not to worry about it, that I needed to go home and sort things out.

The point of this is I knew for FOUR years that something was happening to my body. I was never happy with what my doctors had to say. I have had so many tests over the last four years, but none of them were the right kinds of test. So, listen to your body. If you are not happy with what the doctor says, go to someone else. Use the internet. Everything I needed to know was at my fingertips. Do not feel like you are being a burden to your doctor. Do not feel guilty for asking for medication that you need. Don’t feel bad about rocking the boat. This is your life, and people need you. If you ignore it, it will NOT go away.

“Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go.” Joshua 1:9

A Little About Transplants

It’s been awhile since I posted last, and so much has happened. I finished round 2, also known as Induction 2 a few weeks ago. That means I’m 1/3 of the way through the first part of the trial. It means that I’m completely done with the Induction phase. Yippee for completing something!! The next step in this part of the trial (TT4) is Transplant #1. The dreaded Transplant. This procedure makes me think horrible thoughts…horrible, dreaded and scary thoughts!

I go back to Arkansas in about 2 weeks to begin tests. There are way more tests than usual this time around. I will have the same MRIs, PETs, blood work, and central line placement, but we are adding several other things like lung function and cardiac studies. This is to make sure treatment is going as planned, but also to make sure that I’m healthy enough for transplant. That the procedure won’t cause me to kick the bucket. Ugh just thinking about it makes me nauseous.

After tests and line placement, I have a 250mg dose of a chemotherapy drug called Melphalan. To put this into perspective, I’ve been given a 25mg test dose twice. Both made me so sick that I have no memory of the three days following. The day after melphalan I receive my first of two (tandem) autologous stem cell transplants. I will get approximately 6 million of my own cells back. During the first round of the Induction phase back in February, the apheresis nurses were able to suck out 37.5 million of my own stem cells in a day and a half. I am so blessed. So SO SOO blessed. I have met many people who were only able to produce stem cells in the thousands. And it took them an entire week to do this. I will have enough stem cells for both transplants plus additional transplants in the future. I hope I will never need them, but that is a very real possibility and knowing that they are there gives me a great deal of comfort.

Speaking of stem cell transplants, you might remember a discussion I had with a nurse that I wrote about in my post, “Why Not Me”? That nurse, who I have become friends with, shared her story with me. She has a disease called Aplastic Anemia, which is kind of a cousin to Multiple Myeloma. Kind of. Sadly, Emily recently found out that she is no longer in remission. She will be receiving an Allogenic Stem Cell Transplant at MD Anderson in Houston in a few months. ‘Allogenic’ means someone else’s stem cells. Like me, Emily has been blessed in her transplant process. There are over 50 donors that are a perfect match for her. That doesn’t mean that things will be easy, it just means that they will be easier and she won’t have to wait long. Yes, just like a heart transplant, lung or liver transplant, there is a stem cell transplant donor list.

It breaks my heart that a friend has come out of remission for such an ugly disease. It breaks my heart every time I meet a patient in Arkansas and find out that they are not there for the first time. To find out that they came in for bi yearly or yearly testing, expecting to leave with confidence that their myeloma is still in remission, but actually leaving knowing that this devastating cancer is back; you can’t help but doubt. Everything about cancer makes even the strongest people doubt. People cannot grasp the feeling you get when you realize that it is more likely to kill you than not. Now, imagine having that feeling and having to WAIT for a transplant, knowing that it’s your only hope, and that you may never find a match. So here is the importance of that heavy tidbit: be a donor, people. Be someone’s match by being on the registry.

If you had the opportunity to save a life, would you?

Go to www.bethematch.org to find out what you can do.

I’ve added this website to my “Donations” page, as well as a link to Emily’s donation site. Please consider donating to her medical fund and praying for her treatment and recovery.

“Give, and it will be given to you. Good measure, pressed down, shaken together, running over, will be put into your lap. For with the measure you use it will be measured back to you.” Luke 6:38

A Quick Update

Here’s just a quick update regarding my last post:

1.  I don’t have Parvo!  Or any number of strange wacky viruses I was tested for. My general feeling bad is most likely due to diet change (I can’t seem to stomach veggies right now. Protein is very hit-and-miss. That leaves carbs and sugar….and that’s what I’m living on. Very un-health coach, but I have to eat).

2.  The booby lumps are nothing of concern!  THANK HEAVENS!  Dr. B said in his German accent, ‘You have brown fat!  Brown athletic fat!  Normal!’  I said, ‘Dr. B, are you SURE??’  With a snarl plastered on his face and using his best southern American drawl he replied, ‘Yes, I’m SURE!’  Love that man!

3.  I am advancing towards complete remission!!  The majority of my lesions have shrunk and some have even disappeared!  Praise God!!  All but one of my major markers are within normal limits. Now we just keep them there and focus on my M-spike. I NEED to bring it from 0.5 to 0.0, and I need it to stay there…for forever!  The myeloma numbers in my bone marrow went from 65-70% to ‘no more than 5%’!  This is all such good news.

4. Chemo starts this morning.  I’ve already taken my 40mg of Dex. I’m waiting to be called back for infusions of apprx. 7 different prophylactics plus 2 infused chemo drugs and lastly I will be hooked up to my 24 hour chemo bag comprised of another 4 chemo drugs. Yippee!!

My chemo is over in 11 days. I can do this! Any unconventional nausea hints will be appreciated! Nothing seems to help but it will be better than last time. I’m not afraid;)

‘The Lord is my light and my salvation; whom shall I fear? the Lord is the strength of my life; of whom shall I be afraid?’ Psalm 27

Back in Little Rock..Blah

I’ve taken a few weeks of vacation from blogging.  I spent the last four weeks at home with my hubbs and the kiddos and was able to enjoy being mommy again.  That made it much, much harder to leave this time.  Knowing that I am willingly coming back to be imaged, poked, tested and then pumped full of poison made it difficult but leaving my hearts at homemade it even worse.  I have to tell myself over and over that I’m here for them.  I’m going through this to survive for them.  It will ALL be worth it in the end.

I have a MRI scheduled for tomorrow, had my PET yesterday, my bone marrow biopsy and several blood draws today.  I also had a meeting with my PA this morning to go over the weeks I spent at home.  We learned a few very interesting things at this meeting.  The first being that my numbers are EXCELLENT!  Significantly better than the average myeloma patient.  That means that this chemotherapy is kicking some multiple myeloma butt!  I wish we could have left the meeting at that point, but there were a few other, less positive, things we had to hammer out.

According to my numbers I should be feeling great.  Something, though, is making me feel very ‘flu-like’.  I had assumed that it was because I’ve been anemic this whole time and because my immune system has been literally wiped out.  My PA doesn’t think either of those things would make me feel the way I do, so she’s ordered some out-of-the-box viral screens.  Like parvo.  Yup, the dog virus.  Leave it to me to get something wacky.  So, we will be checking into wacky viruses.  I’ll keep you posted on those results.  Parvo.  Seriously??

Secondly, I’ve got some very scary booby lumps that have everyone a little worried.  I pray that they are nothing, just a reaction to some drug I’m taking or have taken.  I pray that I will wake up one morning and they will miraculously disappear.  All we know is that what started out as one little pea sized lump that was ruled out as being anything other than normal boob tissue is now NOT pea sized and has friends.

I will continue to stay positive, though.  I LOVE my essential oils.  I swear they get me through the day.  I love my apricot kernals (thanks Kinsey!).  I love my turmeric that Dr. Barlogie sent me home with.  I would kill for a cervical adjustment right now, but Lee won’t budge on not adjusting me until I have consent from Dr. Barlogie.  Daddy-o’s so cute with his worry.  It’s very endering…if I say much more he’ll get embarrassed!

All of these ‘natural’ and spiritual medicines make me feel grounded and also make me feel like I can battle the bad parts of chemotherapy.  God gave man the ability to create medicine, but He also blessed us with medicine from the earth.  I think a good healthy combination of the two is the way to go.  Balance is everything!

‘I have said these things to you, that in me you may have peace.  In the world you may have tribulation.  But take heart; I have overcome the world.’  John 16:33

 

Why Not Me?

I’m Home.  I’ve been here for 2 full days and all I’ve done is rest, cuddle with my husband and play with my kids.  I haven’t gone anywhere, I haven’t worried about the pile of mail, I haven’t really unpacked, and I don’t plan on doing it today.  Actually, I think we may go buy the Frozen DVD, maybe paint some fingernails, build legos, or just not do much of anything.  My day to day focus is not what it was before I was diagnosed.  For instance, Gunnar had a bad dream and found himself in my bed at 3:00 a.m.  There was no walking back upstairs and tucking him into bed so that he could be a big boy.  I now find things like that so unimportant.  That’s not how my kids will be ‘trained’ to be big and independent.  Among other things, what builds strong kids in my house are missing mom for six weeks at a time, believing that rubbing and kissing mom’s bald head brings luck, and understanding that mom is very breakable. That’s our focus.

I mentioned in one of my first blogs that I was certain in what led to my multiple myeloma diagnosis.  Whether or not that still holds true, it’s no longer a focus.  I spent the last 6 weeks in what I would have considered, once upon a time, to be unbearable pain and sickness, despair that nothing seemed to dissipate the pain and sickness, missing my family, and, at one point, seriously questioning whether or not I could get through the chemotherapy protocol that put me in the hospital for a week.  I won’t lie and say that I never questioned “Why Me?” or said that this whole cancer thing is unfair.  I did both of those things everyday.  Everyday until I had a discussion with one of my nurses.  That discussion changed everything for me.

The last six weeks in Arkansas, the first phase in my chemotherapy protocol, was called Induction 1.  The clinical study protocol I’m on is known as Total Therapy 4.  Induction 1 included a mixture of 8 different chemo drugs, given separately and in combination.  That is so much poison being pumped into a body at once.  You can imagine what that does to a person’s system (as I mentioned earlier, it put me in the hospital for a week).  Everyday I would visit ‘Infusion 4’ to have blood levels of every kind checked and monitored.  When numbers are low, I would be given what I needed to get them into a healthier range.  For instance, I had problems quite often with potassium, so I had multiple infusions of potassium to increase my level.  I also had a horrible time keeping in fluids.  Nearly every day I’d be given one to three liters of fluid.  Getting these substances into the body takes time, so I was in Infusion 4 ALL THE TIME.  This allowed me to make some pretty awesome connections with other patients and nurses.

I would be lying if I said I loved my nurses all the same.  There are more than a few that I adore!  Those nurses are some of the only bright spots I see when I think of going back in a few weeks.  During one of my infusion days, I was there quite late into the evening.  I was waiting for my fluids to finish up, so mom and I were just chatting away with my nurse.  She is one in which I immediately felt a connection.  She’s young, about 30, intelligent, gorgeous, open, and someone I would have been a natural friend with had the circumstances been different.  I think mom had asked her what made her want to be an oncology nurse, and her answer completely changed my perspective on this cancer.

Her exact words were, “I never wanted to be here in Infusion 4.  I’ve sat in your chair.”  She had worked at UAMS for several years, I think starting out in the emergency room.  One day she had been climbing the stairs and found herself passed out from the exertion.  She went to the doctor and, at 27 years old, was diagnosed with aplastic anemia, a cousin to multiple myeloma.  She spent 7 months inpatient and underwent two transplants.  I believe she mentioned that she was off work for 18 months.  Lastly, she looked at me and said, “I did ask, ‘Why me?,’ but then it all came together, and I realized it was actually, ‘Why NOT me?'”

Being diagnosed with what the majority of the cancer community deems an ‘incurable’ cancer will rock your world.  (I will be cured, and that is not being naive.  The work being done by my doctor and the team at UAMS is changing the face of myeloma)  You will go through denial, anger, sadness and all sorts of other emotions.  You want to blame something or someone.  The truth is, though, that cancer can happen to anyone.  Since being diagnosed, I have heard of, or met, so many young men and women with young children at home going through the exact same thing that I am experiencing.  How unfair, right?

So, why me?  Sure, I try to be as healthy as I can be, but so does everyone else I know.  I know I’m a good person, I try to do everything with a good heart.  I’m a steadfast Christian, and I always try to fight the good fight.  Recognizing that how you shape your life has absolutely nothing to do with getting cancer is the most liberating and healing gift.  It takes the pressure of trying to figure out the “why” and makes it so unimportant.  I’ll leave the “why” up to the researchers.  And when they find that “why,” I’m willing to bet it comes down to something completely out of my control.  Something that can happen to anyone, at anytime, with or without children or a spouse.

I am so grateful that the “Why” is no longer a focus.  There are so many more important things like comforting my son after a nightmare, or playing legos until my back hurts from sitting on the floor, or just doing nothing and cuddling all day.  I am confident and happy with those things, and the anger part of my journey is over.  Seriously, why not me?

‘Not that I have already obtained all this, or have already arrived at my goal, but I press on to take hold of that for which Christ Jesus took hold of me.’  Philippians 3:12

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