Relapse, BEAM and Myeloma Free

It’s been so long since I last blogged. Nearly every week at least one acquaintance asks me when I will post an update. It’s not at all that I don’t want to, it’s much more complicated.

I had an opportunity nearly two years ago to be a patient expert on a mixed panel for PatientPower. They are a national patient advocacy group that help patients communicate with big pharma, navigate the clinical trial process, figure out ways to make our ‘New Normal’ more normal, etc.  On one of these panels I was asked why I stopped writing my blog. Totally caught off guard (it’s strange to be recognized for something as existential as a blog), I stumbled a bit and had to really think about my answer.

In the past, words and thoughts to write down came on their own. In my own research there was so little information available to and about the young, female, Myeloma patient that my thoughts just found the page. Easily, orderly, and painlessly. That wasn’t the case anymore. Especially the painlessly part.

About the time that I relapsed in 2017 my attitude began to change.  I became much more a realist about my own disease than an informant to the newbies that desperately needed my help and the information I had to share.  I was finally being swallowed into the hole of, ‘Me, Myself and I’. For the first time in my life, it became a chore to write about ANYTHING.

Over the next several months I needed to prepare myself and my family for my third transplant.  I had relapsed, and as Dr. Van Rhee said, ‘Any amount of myeloma is too much Myeloma in the body of a 39 year old’.  Definitely true.  I’ve unfortunately lost way too many friends to the ‘lets Just wait and see what happens with these numbers’ approach to treating this monster.  And by lost, I mean dead.  Way too many.

In 2014, I completed tandem transplants under the Total Therapy protocol.  Those both consisted of DVT-PACE with Melphalan.  I swore I’d NEVER do a transplant again.  Whoopsie!  My medical team at UAMS Myeloma Institute in Little Rock decided that my best bet to conquer this new myeloma would be what is called a BEAM transplant.  We would do it at the start of the new year, 2018.

This transplant took about 5 weeks of living in Arkansas. During two out of those five weeks in January/February, I have a little bit of memory.  I wished I had stuck to my ‘No More Transplants!’ guns.  Either that, or I was praying for God to take me, which he nearly did…twice.  It was B.A.D.  I won’t get into the details, mostly because I don’t remember, but also because it was one of those situations where everything that can go wrong went wrong.  I had the Rapid Response team following me, sepsis, DIC, a body wide candida cruxi infection, flu B (with a high temp of 106!), etc.  God is amazing, though.  I have zero memory of the worst part.  He protected not only my body, but my mind, as well.

Knowing only a handful of myeloma patients that survived a third transplant, I worried that I was making the wrong choice.  Especially because it was a BEAM.  That had me remembering friends from my early days at UAMS that passed during their BEAMs.  I made it though, and I would still recommend it to someone in my situation.

I say that right now, Today, as I’m sitting on my hotel bed in Little Rock.  I’ve had my two full days of testing for restaging.  I will say that much has been difficult since the last transplant, but it’s really been tough since at least 2010.  Things just change by degrees, you figure it out and move on.  Like Today.  In three hours I’ll be meeting with Dr. Van Rhee to determine my fate.  I hate these meetings.  Don’t get me wrong, I love my doctor.  I’m actually in awe of him, but the build up, then crash, of determining whether or not you’ve relapsed just sucks!

So my friends, think of me over the next few hours.  Pray that God gives me just a little while, before my next testing/restaging, to be cancer free.  Because if I know one thing, I know this:  No.More.Transplants.For.Me!

And, maybe I’ll blog a little, too.

’fixing our eyes on Jesus, the pioneer and perfecter of faith.  For the joy set before him he endured the cross, scorning it’s shame, and sat down at the right hand of the throne of God’ –  Hebrews 12:2

 

 

Beating the Monster…Again

It’s been a whole year since I updated my blog. So much has happened since then. Some good, some not so good. I had the amazing opportunity to speak at a myeloma conference at UAMS, with Dr. Van Rhee, Dr. Morgan and Dr. Davies, as well as several other amazing myeloma advocates. That was awesome. I felt like I could use all of the knowledge I’ve gained, all of the heartache and pain, to be a force for good. I hope I reached some of the younger myeloma patients out there. Lord knows we need that support!

Since then, actually since about February of this year, it seems as if I’ve been in constant flux. I never seem to know if I’m coming or going, if my myeloma is behaving or not, if my immune system will or won’t work this week, etc.  Oh, did I forget to mention that I’m no longer in remission?  That was a hard one to swallow.

After several checkups with Dr. Van Rhee where we carefully watched what was happening in my body, we got the news that I never wanted to hear. Not only had the Myeloma in my marrow come back, but my monster, the plasmacytoma in my chest is active and growing. On top of that, my myeloma has become nonsecratory and refractory to most of the chemotherapies I’ve been on thus far. That means that it’s SMART. It has mutated and ‘learned’ the drugs given to me to fight it. It no longer produces the protein found in blood and urine that makes it easier to track. It truly, truly is my monster.

For the past 3 months I’ve been on a chemotherapy regimine of cytoxan and Pomalist, along with all the other magic pills I take. I wish I could say it’s been fun….but..no. Cytoxan is a BEAST. Our goal is to reduce my myeloma numbers as much as possible to prepare for a third transplant in January. Yes, a THIRD transplant. Heaven help me!  Lol….

I return to Little Rock the first week of January. Mom and I will live there for about a month, maybe a little longer. Unfortunately, we weren’t able to secure the amazing charity apartment through Open Arms, so finding an apartment or house near to the hospital, and safe for how fragile I will be has been somewhat difficult. God will provide, though. This I have no doubt. He has given me so much through this period of my life, it’s hard for me to stay dissapointed for too long.

I know so many people still pray for me, and for that I am eternally grateful. Please continue to do so!  I’m in a different position than I was in the beginning, in 2013. Because my myeloma has mutated, gotten smarter, things may be a little more difficult. I’m going to try to keep up with this blog, to let people know how I’m doing, how my family at home is doing. Speaking of, this is going to be difficult for my babies. If you see them, give them a smile. It’s hard to have a mom so far away when they know it’s because I’m sick.

One last thing. As we get closer to the holidays, please remember to pray for all of the families affected by cancer. It seems that there are more and more every day. Being a support group leader, I see new faces all the time, but it’s not just those faces. It’s children of friends, husbands of friends, parents of friends. And it’s cancer that we may have never heard of before. Hold your loved ones close, and if you haven’t been affected by these destroyers, praise God, and pray for those of us that have.

‘Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.’  Galatians 6:9

Will You Join Me?

If someone were to ask me Christmas of 2013 where I would be in three years, it most definitely would not be where I am today.  I think it was three days after Christmas that year that I found out I had Multiple Myeloma, an ‘uncurable’ cancer.  I never would have guessed that three years from then I would still be on several chemotherapies, still have to deal with pain, still be so incredibly nervous every time I visit my myeloma specialist because most of the myeloma world says that recurrence is inevitable.  But, this is exactly where I find myself, and I have no other choice than to walk the path God is leading me on today.

Much has happened since my last blog.  My kids have grown like weeds, my hair has grown back and my husband and I continue to grow closer every day!  That’s alot of growing!  I’ve also taken part in a few myeloma trainings through a wonderful organization called Patient Power.  I’ve written a few articles for the Myeloma Crowd, and I still talk to everyone that will listen about the life altering world of being diagnosed with a cancer most people expect you to die from in just a few short years.  Not all, but most.

Amazing things are happening in the multiple myeloma field.  Actually, amazing things are happening in the realm of all cancers.  Today, targeted therapies using your own genetics is becoming more and more the norm.  We have T-Cell therapies where patients are given an engineered form of the HIV virus that kills tumor cells and so many new chemotherapies that, as my doctor likes to say, ‘adds to our toolbox of care.’  This gets me around to the point of this blog.  None of these new therapies would be possible without support from the many foundations that donate to research for the cure.

Please watch the Fighting Fire with Fire video released by the Leukemia and Lymphoma Society.  The LLS funds research for the blood cancers, including Multiple Myeloma.  Without the LLS, I might not be in remission today, or I might have died in my first 18 months, which is the amount of time many myeloma patients were given only a few short years ago.

Over the last few days, you may have seen commercials for Light the Night at the Devon Boathouse in OKC this coming Friday, November 4th.  Light the Night is the Leukemia and Lymphoma Society’s main fundraiser where survivors, warriors, family and friends come together to honor those who have survived, those who are fighting and those who have lost their blood cancer battle.  Incyte Pharmaceutical has honored me by sponsoring a Light the Night team in my name.

This is a family friendly event, including activities for kids, fireworks, and a live band.  I would love to see as many people as possible support this cause, not only for me, but for the thousands of kids and adults in our community affected by blood cancer today and in the future.  If you can’t come out on Friday night, please consider donating.  You can donate to our team, which Incyte will match, or you can donate directly to me.  I can promise you it will be money well spent!

Thank you so much for your continuing support and prayer!  These last three years have not been easy, but they have been easier thanks to all of you!

‘For I know the plans I have for you, declares the LORD, plans for welfare and not for evil, to give you a future and a hope.’  Jeremiah 29:11

 

Come Again?

It’s been almost a year since I’ve written a blog. And it isn’t because I have not wanted to. I could tell you that it is because I’ve been so busy loving my children and husband. Or that I haven’t had time because I’ve been focused on taking care of my home, my family and myself, or any number of reasons that are absolutely true. But, those reasons have not kept me from writing a blog. Just like the apartment bed I’m sleeping in right now, my blog is a placeholder for the scariest, most painful part of my life, and I had no desire to go back there.

But here I am. Both in this godawful bed with 7 air conditioners buzzing right outside my window and writing a blog at four in the morning because I can’t sleep. In Little Rock, Arkansas. Land of wonderful restaurants, beautiful river trails, quirky little galleries and the University of Arkansas Medical Sciences/Myeloma Institute for Research and Therapy. My home away from home. The birthplace of my darkest moments. But also the birthplace of my only hope for survival.

Most everyone knows that I was diagnosed two days after Christmas, 2012, with a cancer called Multiple Myeloma. I had never heard of it, and why would I? Statistically, I wasn’t supposed to get it. But I did, and I went to Little Rock to find my hero, Dr. Bart Barlogie. He had me in remission before my first stem cell transplant, and after my second transplant I was considered MRD Negative. That stands for Minimal Residual Disesase. So, in the most detailed machine, one that looks at over 4-5 million events (cells) they could see no myeloma. And still, today, I am MRD Negative in complete remission. *Sigh of Relief* Or so you would think. Afterall, I’m writing a blog. So it can’t be all good news, right?

Every four months or so I come back to Little Rock for testing. It’s no big thing, just here a few days, lots of scans, blood tests, see the doctor and go home. This week was my first week to meet my new doctor, Dr. Van Rhee. He does all the trials on the Immunotherapy treatments. Very cool stuff. So I was happy and excited to meet him. Plus, mom and I had some burning questions about my genetic profile, kareotype, etc. These were questions we couldn’t get to Barlogie before he moved out to New York.

So, we were sitting in the little exam room and in walks the cutest, sweetest personality, maybe Sweedish, man and introduces himself as Dr. Fritz Van Rhee. He had the SOFTEST hands. Ank kind eyes. I liked him immidiately. He sits at his computer and pulls up what I recognize as my PET scan. Then flips through my chart and starts quickly going front to back to middle, then looking at the screeen, then flipping some more. Then he lands on one of the pages that mom and I wanted to tald to him about. It’s called a Foundatiuon One Report. It looks for mutations in my disease. He starts reading, looking at my PET, then stops and looks at me. Oh Crap. I realize right then that I’ve gotten much too used to good news. It’s time to tighten those facial muscles and engage my core or I might crumble right then.

“Have you seen your PET?” he says. I say no, that it has not shown up on my MyChart (our online system to review records). I glance over to mom and say, “This is why it wasn’t on there.” Dr. VanRhee is looking at his compurter and rotating my 3D body around and around. “You have a mass here.” he says. “No, that’s a lymphnode that I’ve always had, you can check my reports.” I reply. I can feel a nervous giggle working it’s way up my esophogus. “No, your node is here (he points), this mass here (he points…to a mass I’ve never seen before). And there it is. I can see my 17 months of remission explode into a million beautiful lights and fizzle out on the cold linolium floor.

So now comes the serious talk. I will be taken off protocol immidiately. For those of you that didn’t know, I do maintenance chemotherpay daily. I would have continued to do that for 3 years. That has been stopped and I have been given a regimine of Kyprolis, Monday and Tuesday. Dexamethasome, Monday and Tuesday. Revlamid for 3 weeks on, one week off. A double dose of Kyprolis. I don’t have any friends on that regimine. But I don’t say that. Remember, I’m working really hard to crumble because I know what’s going to be said next.

“We are going to biopsy this mass, Stephanie” Dr. Van Rhee says. “We need to know immidiately if there is myeloma there.” But, I’m confused at this point. “Wait a minute, I don’t have any myeloma cells in my marrow and I’m MRD negative. How can there be myeloma cells in the mass?” I say as I think I know the answer, but am probably in a bit of stupor and denial.

“This happens many times in relapse (not that word not that word not that word). You may have become Nonsecretory. You have no M Spike, no diseased marrow, no protein in your urine. You can grow lesions on their own. That is why we image you so much even though you are in remission. Had you not had the PET, we might not have found this until it was too late.”

I go inside my head at this point, and the rest of the visit is just prescriptions, describing my new chemo side effects, questions about home life and working, to which I replied that my homelife was my work. His response to that was “Good”. I can’t help but think of my nonsecretory friends. Many of them are already gone. Enter the stone face panic. I’ve become really good at keeping that in check until I’m someplace private.

The next dreaded thing to do is call Lee. Everyone who knows me knows how much I absolutely adore my husband. He is my best friend, one of only 4 people on this planet whom I am comfortable enough with to walk around without a hat or scarf when I had no hair, and we took our vows seriously. Every last one of them. Which makes this very difficult to tell him.

It was by far the hardest part of my day.

So here I am, now 5 in the morning, waiting for UAMS to call and tell me they were able to find a spot where they could sqeeze me in. If they cannot do it today, mom and I have to drive home and come back in a few days. Ugh.

After I’ve been biopsied, started my new chemo rutine at home and finished my first cycle of Kyprolis I have to go back to UAMS. I was so hoping they would tell me this time that they are confident in my health, that I’ve done great, and that I don’t havve to come back for 6 months! That is what should have happened. Instead I have to come back in 5 weeks.

So, Friends, I’m sorry I haven’t kept up via my blog. I promise to do better. I’ve met several people that have found the doctors at UAMS through this blog, so I believe there is a purpose other than my own. But please pray for me. Please pray that the core biopsy comes back clean for no myeloma. That I am not a nonsecretor, that I’m still in complete remission and am MRD Negative. Please pray for the strength of my family, too. It shreds my heart to know that we may be getting ready for round two.

“29 He gives strength to the weary and increases the power of the weak. 30 Even youths grow tired and weary, and young men stumble and fall; 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 be faint.” Isaiah 40:29-31

Drip…Drip….

You know what is truly frustrating? Having a brilliant blog post suddenly disappear and fall into the mysterious void of my computer. Time is precious, and I can’t get all morning back. I’d pull my hair out if I had any!

Speaking of time, it’s that time again. I leave for Arkansas on on Monday. Next week is FULL of tests. I will have every test that I have had in the past 18 months. That includes a PET scan, multiple MRIs, multiple tests to see how my heart is holding up, a pulimary function test, they will take more tubes of blood than I can count, full body X-Rays, tests that examine bone strength, a fine needle aspirate of the plasmacytoma (the monster in my chest), a bone marrow biopsy, and several others. Then they will gather up all the results, set them on Dr. B’s desk and he will determine how successful the past year has been. No, I’m not nervous. HA!

The last three weeks have been so busy with birthday parties, Valentine’s parties, school field trips, etc. that I haven’t really even thought about the weight of next week. For some reason, anxiety and worry have become a slow drip over the last day or so. Drip…(what if there is M protein present)…drip (what if they find myeloma cells in my biopsy)…drip (what if that stupid monster is no longer stable)…drip (what if my immune system is not improving)…drip (what if my kidney or liver tests are concerning)…drip (Heaven forbid I have a new lesion!)…drip (I am NOT prepared for anything to come back abnormal)…drip (OMG, there are so many things that could come back abnormal!)…DRIP (STUPID CHEMO BRAIN! I don’t even know what all of those abnormal things are!) Note to self: Now that my brain is not being constantly bombarded by toxins, it’s time to start studying.

Needless to say, next week is really a big deal. I know I’ve said it before, but I have some of the most incredible prayer warriors supporting me. If you think of me over the next week and a half, or so, please pray for a positive outcome on all tests. Send hopeful thoughts in my direction. Please pray that I stay in stringent remission, and that I continue to be MRD negative. I know how large my glass is. All of those drips could never reach the top!

‘Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.’ John 14:27

I’m No Longer Tethered

Before cancer I really had no idea what chemotherapy was. I mean, I knew there were different chemotherapy drugs, but were they pills? Injections? Infusions? It turns out that they are all these things and more, plus there are various ways to get those drugs into your body.

I was so naive when my doctors started telling me about all of the ‘in’s’ and ‘out’s’ of the treatment process. I remember thinking that it didn’t all sound too bad. I would get some shots, take lots of pills, get an IV line called a Central Venous Line put in my chest that feeds into my heart (obviously the most frightening part) and a chemo bag. That last one didn’t even register as significant. Chemo bag? That doesn’t sound very threatening.

Well, it is threatening, and it is the worst, most frustrating and annoying part of this whole process. When my treatment began each time I came up here, my nurses and APNs would fill my ugly black rectangular bag with 4 different liquid chemo meds controlled by two battery powered pumps. One pump controls adriamycin, also known as the red devil, and the other pump controls a mixture of cysplatin, cytoxin, and etiposide. Then I have two pill forms and two IV push chemos…but, back to the bag.

Once the drugs are in the bag, the nurse attaches the corresponding IV from each bag into the correct lead going into my heart. My body, my HEART, is literally tethered to that bag. (There have been several occasions I’ve forgotten about the bag and walked off, only to be reminded by the not so subtle yank to my CVL.). I have to take it everywhere. To the bathroom, the store, I have to figure out how to get my clothes on and around/between the lines and bag. It’s in bed with me, and it tries to lull me to sleep with its constant ‘swish-swish’,’swish-swish’. For five whole days! I loath that bag…and I NEVER have to use it again!!

Yesterday was my last bag day! The feeling is so freeing. No more being tethered. No more rearranging to make sure it is in an optimal position. No more quiet ‘swish-swish’ in my ear that always seems to keep me awake. See ya later, alligator! Sorry to say, but you won’t be missed!

“And he said to him, “Truly, I say to you, today you will be with me in Paradise.” Luke 23:43

Listen Closely

Another round of chemotherapy has come and gone since I last blogged.  That means that the beginning of a head of hair has come and gone, as well.  Actually, I’m working on what will hopefully be the last head of hair to fall out.  If everything goes as planned I’m thinking that I will have a good head start in actually keeping my hair around mid-March.  I should only lose it one more time…because I only have ONE more round of the big chemo!  It has been a full year since I was diagnosed with Multiple Myeloma, and I’m nearly done with this part! Hallelujah!  (I should start my 3 years of maintenance chemo in OKC around mid-March)

Mom and I drive to Little Rock on Monday.  I have several days of testing, then chemo hookup on Thursday.  The LAST chemo hookup!  Looking back over the year, this day seemed so unreachable, yet here I am.  This year was full of heartache, full of pain, full of doubt, full of disbelief, full of denial and full of sadness.  At the same time, though, it was also full of glory, full of accomplishment, full of friendships, full of relief, full of survivorship and full of love.  I’ve come to realize that God did not have only a plan for my year, but a plan for many friends and loved ones, through me.

As a cancer patient, when I hear someone say “God will never give you more than you can handle!”, my mind silently screams something along the lines of, “Really?  I wonder how many people told that to the people that have DIED from cancer.”  I know that’s not nice of me, and I know that people who say this are only trying to be nice and stay positive, but people need to stop saying it.  It’s really a terrible thing to say.  When I have a breakdown because my pain is unbearable, does that mean that I’m not strong enough or over reacting?  I mean, if God wants me to feel like I’ve been run over by a truck day in and day out, surely I can handle it, right?  Or if God is not giving us more than we can handle, what does it mean when my friend’s myeloma keeps mutating so that their high risk disease is untreatable?  Because, on my own, I’ll be really honest.  I can’t handle it.  Nor do I want to.

As I look back on this last year, the toughest year of my entire life, I’ve come to realize that God gives me more than I can handle ALL OF THE TIME.  I’m no different than anyone else.  He gives us all more than we can handle.  Maybe that’s with cancer and the fear of dying, maybe that’s with the loss of loved ones, the loss of employment, disaster, etc.  It would be so easy to give in when these things happen.  Sometimes the devastating is truly more than we can handle.  Or, at least, handle alone.

I’ve received so many messages, notes, cards, and phone calls from friends and family telling me how much my struggle has impacted them.  They’ve felt compelled to do something for my family and myself or for someone else.  Without these friends and family, I would have never been able to handle this year.   Sometimes it was a kind word in the mail that came on a particularly difficult day.  Or it was a monetary gift that helped me pay a medical bill.  Or it was a prepared dinner when I couldn’t think straight enough to remember how hot the oven needed to be to bake chicken.  Maybe God spoke to that friend or family member and reminded them that they could fulfill a need.  I know that I have received those subtle messages in the past.  Sometimes I’ve heeded them, and I’m embarrassed to say that sometimes I have not.

This ‘reflection’ of the past year has changed how I will respond to that ‘gut feeling.’  I do think that when we receive them, we are hearing God.  He’s using us to help someone ‘handle’ a difficult time.  And in doing so, He is also teaching us many things.  How to be compassionate, how to know His Word over all of the other junk that filters through our minds, how to help in the healing of those around us.  I’ve learned many lessons this year, but I think this has been one of the most valuable.  I plan on listening a lot more carefully from here on out.

‘Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.’  Philippians 4:9

Prayer and Remission

Both of my stem cell transplants are over. Done. I’m so grateful I made it through this part. There is so much to complain about regarding this whole process, but I try very hard to focus on only the positive. It would be so easy to slip into a desperate depression about this Multiple Myeloma thing, and what it means for my future. It would probably be somewhat of a comfort, although momentary, to curl up in a ball and just be done with it. But I think I’ve already been at my worst, and if I can get through tossing and turning in a hospital bed, thinking I’m dying, I can get through anything. If I can get through throwing up for weeks at a time, four times now, I can get through anything. If I continue to have the support system of prayer warriors, both known to me and unknown, I can get through anything. I have zero doubt that all of these people have made a positive impact on my cancer. Anyone that says prayer is just hopeful thinking or that prayer won’t make a difference has never been in shoes like mine. It makes a huge difference.

My cancer is a tricky one. It involves plasma cells, which are found throughout the body. So, basically, I’m covered in cancer (or I WAS covered in cancer). Multiple Myeloma is supposedly incurable, but I’ve met 19-25 year survivors. All of them will tell you that prayer was and is a significant factor in their survival. I’m not saying that everyone I’ve met who prays has stayed in remission or even survived, but the ones that are surviving hold prayer close to their heart.

Faith is an amazing journey. Sometimes it takes something earth shattering to renew it or to make it real. I’ve always been a praying person, but it took cancer to make me realize that prayers are living things. I have so many people praying for me, and I ‘feel’ every single one. That probably doesn’t make sense, and I don’t know that I can accurately explain what I mean. But when you start with 70 to 80% of your bone marrow being myeloma and now it is undetectable, you start to realize that science, combined with faith, is something entirely different and something very complex and Holy.

My status is now “Stringent and Complete Remission”. I still have two more rounds of the heavy duty 7 drug chemotherapy and three years of maintenance chemo, but I have a head start to being one of those survivors. I will pray fervently that I stay in Stringent and Complete Remission, and I would ask those friends (both known and unknown) and family to pray that I stay that way.

Cancer is a horrible, disgusting, frustrating thing. There are so many people fighting to overcome it, and so many fighting to keep it out of their lives. Pray for them! Even if you don’t know someone (very unlikely these days) that is suffering from it, send up a general prayer. Or even a prayer to the scientists that are trying to find a cure. I NEED that cure! We all need that cure.

I do have a specific prayer request for friends of mine. These young women are tired, have slipped out of remission and/or are in a great deal of pain. Please send your thoughts and prayers in their direction. All of them are amazing, strong, beautiful women that could use a little extra help.

You all are AMAZING, and I cannot thank you enough!

‘Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven. Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective.’ James 5:14-16

When Life Gives You Lemons

I had the awesome opportunity to take a road trip with Lee and the kids last weekend.  I had been in Little Rock for the previous week doing my pre-transplant/chemo tests to make sure I was healthy enough to go through a transplant again.  Usually, my test week isn’t too bad.  Unfortunately, it started off on the wrong foot and ended on what could have been a disastrous foot.  But, God has a sense of humor and I suppose I learned that bad situations, sometimes, are good ones in disguise.

My first test last week was a MUGA scan.  MUGA stands for multigated acquisition scan.  They mix my blood with a little radioactive material, inject it back into me and take pictures of my heart.  No biggie, but I feel like I should be glowing.  There is a waiting period of about 15 minutes between mixing and re-injecting.  Lucky me, I got to wait that whole 15 minutes with Debbie Downer.

I always try to start a conversation with whoever is in the waiting room with me.  People are usually pretty interesting, helpful and positive.  Prior to this lady, I’d only come in contact with one other truly negative person.  Needless to say, that lady had blown my mind with her offhand comment about her ex-husband and her previous best friend…story for another day.  Anyway, this lady told me that she and her husband (her husband is the myeloma patient) started their journey about 14 years ago.  She said that they became close with about 12 or 13 other couples during their treatment phase.  At this point I’m thinking, “Oh, that’s so nice!  How blessed they are to have that many couples they consider friends going through the same process.”  Then she says matter of factly, “They’re all dead.”  I so wanted out of that conversation right then.  She went on and on about how none of them died from myeloma, all died of infection like central line infection, pneumonia, blood infections, etc, etc, blah, blah.  She mentioned that they never get to have Christmas on Christmas because one of the grandkids is always sick, they don’t take vacations because risk of infection in an airplane is so high, they pretty much are recluses in their home during the fall and winter, negative, negative, negative.  What a waste.  How depressing.  Tell me, what exactly is the point of surviving this stupid cancer only to die of infection?  That was the first bad situation of my week.

I met a guy in the main waiting room right after the previous lady, and his story was just as depressing.  He was out of remission, I think he said 8 years in.  He felt the need to tell me how healthy he used to be, and he never got that health back.  He was in his 30s when he was diagnosed.  Yippee.  Second bad situation.

Towards the end of the week mom and I learned that one of the patients we considered a friend passed away.  The last time I saw her, nothing about her said she was going to leave so soon.  Mrs. Washington was a radiant woman.  She had very dark skin and wore either all white or all jewel tones.  She was so so beautiful.  She always asked me how I was doing, and never appeared to have a bad day.  Mr. Washington is a minister and it seemed that their last week there, they were always in the ‘pod’ right across from mine.  We had several conversations about God, staying strong, persevering, etc.   Her cancer started as multiple myeloma, but as it sometimes does, she ended with leukemia.  Looking back, Mrs. Washington had the slowed down movements of someone very weak.  You notice that when someone has gone through a tough treatment.  It’s almost like watching someone move their limbs through water.   We knew her treatments had stopped working.  What we didn’t know, and didn’t expect, was that her body would stop working only 2 weeks after her last failed chemo.  2 weeks.

Since school starts next week, Dr. Barlogie let me go home so I could be here for the kids.  They picked me up in Little Rock and we drove to Murfreesboro for a weekend road trip.  There is literally nothing in that part of Arkansas except for Crater of Diamonds National Park, a tiny miniature golf and a swimming hole.  Crater of Diamonds is the only open to the public, keep what you dig up diamond mind in the US.  My kids LOVE rocks and digging in the dirt, swimming and golf, so we thought it would be the perfect distraction.  What we didn’t plan for was flash flooding, loss of power in our motel and 70 degree cold rain.  These conditions could have been miserable.  They should have been miserable.  But we had a BLAST!

The first night we spent the evening making shadow puppets on the wall and reading by flashlight, all while a crazy storm blew through.  It rained so hard that there were puddles in the park the next day that went up to an adults mid-thigh.  Of course the kids ‘accidentally’ stepped in each one of these.  They made mud pies, found their special rocks and explored the muddy park in t-shirts and no shoes.  We figured we should give it a rest the first day when their lips started turning blue!  We went back to our motel around 11a.m., which by that time had power, ordered a pizza and ate it in bed while the 5th or 6th inch of rain fell that day.  Towards the evening, we put on more grubby clothes, cut holes in big black trash sacks and used as ponchos, and went out diamond digging again.  Before we went home the next day, we went out again and didn’t find a thing.  Were we irritated that our weekend road trip was ruined?  No way.  We were COVERED in mud, pruny from being wet all weekend, stinky because none of us had packed enough clean clothes, and should have been disappointed because all of our other plans had been rained out.

Plans get rained out all the time, though.  I suppose it’s all about what you make of your time.  We could have been so negative.  We could have kept the kids out of the waist high puddles.  I could have stayed inside because I was worried about my risk of infection.  Maybe I should have, but I’d rather my kids remember me as the soaking wet, bald-headed, diamond digging, as full of grace as Mrs. Washington mom than the afraid, miserable mom that I could be.  That doesn’t mean that I don’t have bad days.  I have some very, very bad days.  But I will do my best to control what I can.  I refuse to let this stupid cancer hijack more than it already has, and I will make the best of a very, very bad situation. 

 

‘For by him all things were created, in heaven and on earth, visible and invisible, whether thrones or dominions or rulers or authorities—all things were created through him and for him. And he is before all things, and in him all things hold together.’  Colossians 1:16-17

Myeloma Newbies, READ ME!

So, an amazing thing happened when I went back to Arkansas for my first transplant.  I was sitting in the waiting room to get my line put back in my chest when I noticed another young female with a CVL (central line) bandage.  I see very few people my age, so I had to find out if she was there for the same reason I was.  It turns out that her name is Angela, and she has Multiple Myeloma, too.  Yay for finding another person my age, but boo she has myeloma too…and a family with young kids.  Just.Like.Me.

That isn’t really the thing that is so amazing, though.  When I introduced myself she immediately started asking questions about who my doctor is, where are we staying, how was my first round of chemo, etc.  When I told her the name of the apartment complex that we stay while in Arkansas, she immediately said, “Wait, are you Beating the Monster?  Did you go to Costa Rica?”  I’m sure my jaw dropped at that point, but I replied with a, “You know my blog?!”  And here I thought my followers were just family and friends!  It’s a little humbling/embarrassing/super cool..etc.  I told her that I was “Beating the Monster;)” and she said that she started reading all the blogs she could get her hands on that dealt with MIRT, Dr. Barlogie and UAMS.  Amazing blogs like Nicks Myeloma Blog.  If you want to read some amazing stuff, visit Nick.  He’s got way more experience and way more myeloma time under his belt.  Yet another person that knows that remission of this stupid cancer leads to cure, and that if we could get more people to MIRT we would be saving more lives.

I was fortunate enough that my Oklahoma City oncologist sent me immediately to Arkansas and Dr. Barlogie.  I have learned, however, that I am in a VERY VERY small minority.  Realizing that people like Angela, who I don’t believe was sent here by her local doctor, end up going to the Myeloma Institute for Research and Therapy because they read former and current patient’s blogs really hit home with me.  And here’s the thing:  I KNOW there will be many people at this point that say, “What??  She made that kind of decision based on PATIENT’S BLOGS?  How irresponsible!”  The answer is an ear-splitting, arms raised to the sky, emphatic “HECK YES SHE DID,” Why?  Because when 90% of the cancer community says that myeloma can’t be cured, that the survival rate is anywhere from 5-10 years, and you get to read blogs by myeloma survivors that have been in remission for 15 years plus, it tends to wake you up from the shock that’s left over in your brain.  It’s that shock of a doctor telling you that yes, you have a TERMINAL cancer called Multiple Myeloma, and all they can do is try to improve/extend the rest of your short life.  Screw that…I’ll go for the cure.

So instead of telling all you about the horribleness that was my first transplant, I think the more responsible thing to do is direct this post to all the Myeloma newbies out there.  I really hope you find this post because there is so much to know right off the bat.

1.  Don’t believe, for one second, that you are stuck feeling the way you do right now.  Most people that are diagnosed with this disease found it because of broken ribs, sternums and spines.  Those seem to be the most prevalent, although I did hear about a lady that broke her arm in 3 places just buckling her toddler into a car seat.  I also met a patient that broke his femur because he tripped.  Get to Dr. Barlogie.  My pain improved drastically, and very quickly (I had 3 broken ribs and a gigantic tumor in my sternum that caused a break there).

2.  Get in touch with a doctor/team member at MIRT BEFORE you have any procedures like chemo or radiation.  Take the bull by the horns, if you have to.  Don’t wait for your doctor to refer you.  I was very lucky here.  The day after my first contact with a MIRT team member I was scheduled in OKC for radiation to my plasmacytoma (tumor in my sternum).  I am so grateful they called when they did.  If I had gone ahead with that radiation two very important things would NOT have happened.  1) Apheresis (stem cell collection) would not have been as successful and it would have taken possibly weeks longer and 2) I would not have been able to be on the Total Therapy 4 protocol.  I think the stem cell collection part is probably the most important.  You need those cells by the millions for your transplants.  Those babies will save your life.

**(If you get there after you have already had radiation or another chemo, don’t fret.  I’ve met so many patient’s that are on TT5 and 6 and are doing GREAT.  Apheresis is just so much harder for them.)

3.  This is my opinion, but if your doctor says the treatment in Arkansas is too aggressive, get a new doctor.  Too aggressive?  This is your life.  Can you give up 6 months to a year to gain 40 more?  Don’t let a doctor tell you how much to value your life.  That’s your decision.  Again, I’m fortunate to have an AWESOME local that told me to get my hiney to Dr. Barlogie, but so many of my new friends were not.  They found out about MIRT on their own.  By reading blogs.  Now their 5 to 7 years to live has become “CURE”.

4.  If you are still skeptical, do your own research.  Everything you need to know is online.  MIRT has already hit the 15 year mark for the Total Therapy Protocol with something like a 74% survivability.  Cure.  Most doctors won’t use that word, but I’m so glad I have a whole slew of doctors in OK and AR that will.

5.  If you are panicked about where you will live while you are there, message me.  I’ve got tons of leads on furnished apartments, some reduced prices for UAMS cancer patients, and even a few that are of very little cost to the patient.

6.  I know, you are thinking, “Arkansas???  How could the leading institute for this deadly cancer be in Arkansas??”  (Think Sam Walton.  He had myeloma, too…hmmm….)  I thought the same thing.  But it is!  And the people and care there are pretty awesome!

7.  Prepare to have your butt kicked.  I will not lie to anyone that is getting ready to go through this.  There will be periods when you think you’re about to die.  But you won’t.  So suck it up and know that there is an end to your suffering.  Also know that it’s OK to feel terrible and hopeless.  All of us do at some point.  So, if you find yourself puking into one of those blue vomit bags in the middle of a crowded elevator, it’s OK.  We get it.  Some of us have been in your same spot (me).

8.  If you find yourself inpatient on the Myeloma floor (yes, we even have our own floor!) while undergoing treatment, prepare to be WOW’ED!  I’ve had multiple stays there, and they were a very positive experience.  Except the sleep…

9.  Listen to patients when they have suggestions for ways to make you feel better.  Some of my greatest tricks and tips came from patients, not my doctors or nurses.

10.  Speaking of nurses, there are none finer on this planet.  That’s just my opinion, but it was gained through experience.

11.  If your doctor ever tells you, “I’m sorry, there’s nothing else we can do.” or “We’ve done all we can” OR “You have 3 months to live.” Get on the phone to MIRT!!  I don’t have enough fingers and toes to count the number of people I have met there that are in years 5-10 of COMPLETE REMISSION after being told the same thing.

12.  You might be thinking, “How different can two treatments be?  I think I should just stay close to home.”  You’re way wrong, and they are WAY different.  Missing your family is so hard.  I know, I’ve got a 5 and a 7 year old.  I have a husband I miss terribly.  But I’d rather miss them for a year than have them miss me forever.

There are a thousand other things I can tell you, and I would be happy to.  If you are a newbie or oldie to myeloma feel free to contact me.  If you are a caregiver, I can hook you up with my mom, who is caregiver extraordinaire.  She takes her job seriously and is a FIERCE advocate for me and my new friends in AR.  She has all the caregiver answers to any question you can think up.

Oh, one last number that is very personal to me:

13.  If you are young.  If you don’t fit the ‘myeloma criteria’.  If you have babies at home that depend on you.  If you have a family that depends on you for financial reasons.  It will all be OK.  You’ll find a way.  We all have.  When it gets overwhelming and you think you can’t do it, know that there are a bunch of us out there.  While most who are diagnosed are in their 60s and 70s, there is a group of 30s and 40s, too.  We are small, but we are mighty!  We are the remission group…the CURE group of the future and we grow in numbers every day.  Sad, but true.  That may sound corny to some people, but they obviously don’t have myeloma;)

There is a mountain in front of me, and you can rest assured that it will be thrown into the sea.

“And Jesus answered them, “Truly, I say to you, if you have faith and do not doubt, you will not only do what has been done to the fig tree, but even if you say to this mountain, ‘Be taken up and thrown into the sea,’ it will happen.”  Matthew 21:21