Now, where is that darn line…

Nothing big going on really, just wanted share something for which I would appreciate your prayers.  I’m having good days & bad days recently.  My problem is that when I have a good day, I’m having a hard time knowing when I should stop…a hard time recognizing where that line is...the one where if I cross it I’ve done too much.

For example, this past Friday I felt pretty good.  Brian needed me to bring him something for the football game that night.  I decided that while I was out I would run by Hobby Lobby to pick up some supplies, by the store to pick up a few groceries & by Walgreens to pick up some prescriptions.  I did great at Hobby Lobby.  I felt fine.  I then ran by the grocery store.  I did fairly well while in the store.  However, as I was standing in the checkout line, I felt myself starting to struggle.  I got the groceries in the car & went through the drive through at Walgreens.  By the time I got to the house, it was all I could do to get the groceries in the house.
 

So, I must have crossed that proverbial line somewhere between when I left Hobby Lobby & when I got home.  I just couldn’t see the darn thing.  As a result I have tanked pretty much all this weekend.  I got up Saturday morning & ate breakfast, then went back to bed & slept for about 4.5 hours. I slept until 10:30 Sunday morning, ate lunch, then went back to bed & slept another 4 hours.  I would say call me Sleeping Beauty, but that might be pushing it.

 

Please pray for me that I will learn to recognize where that line is & not cross it.  Unfortunately crossing that line prevents me from doing the things I really want to do…like go to church this morning.  Its really frustrating.

Thank you dear ones!  I love & appreciate you so very much!

 

The status quo stinks...

Mama & I got back from MD Anderson today.  I wanted to update last night, but was so tired after I got through packing, I just didn’t have it in me.  Its kind of frustrating how easily I get tired, but I guess I just need to suck it up & get used to it for now.  I’m learning that the only thing getting down or frustrated accomplishes is making me miserable.  So buck up soldier!  Things could be a WHOLE lot worse!

 

We got to see my doctor yesterday.  He said that for the most part my test results showed minimal change.  A few numbers had gone up just a little, but not enough for alarm. We will still not be doing any cancer treatment at this point.  For now, between Dr. Shah at MD Anderson and Dr. Cole here in Tulsa, they will continue to monitor me.  I see Dr. Cole in early November & will be monitored by him, probably every 4-6 weeks.  I will also continue with the IV Immune Globulin treatments to try to boost my immune system.  I will then go back to see Dr. Shah in 6 months.

 

I’m not going to lie, as the title of this post says, the status quo kind of stinks.  In some ways I feel like Wile E Coyote with the anvil hanging over my head.  I tend to be the type of person to want to move on & deal with things…not wait & see.  I’m learning to be patient with that.  Hmmm…I do believe God is working on me still yet.

 

As soon as I learn anything new of if there are any changes, I promise I will update.  If you don’t hear from me for a while, just know that we’re still in that stinky status quo phase.  Again, thank you for your comments & prayers.  As I’ve said before, they help sustain me.

All the news that's fit to print...

Well, its been a while since I’ve updated.  So long in fact that people are starting to say, “I’ve checked your blog but didn’t see anything.  What’s going on?”  So, here I am in all my glory…for whatever that’s worth.

At this point things are pretty much status quo.  I have now had four IV immune globulin infusions. My immune system numbers had improved enough after the third one that they let me go 2 months before they retested me.  Unfortunately, my numbers had dropped enough over the 2 months that my doctor said I needed the fourth infusion.

I’m actually writing this from Houston tonight…and it’s my birthday.  Kind of a weird way to spend your birthday.  Anyway, my Mama & I are here for a checkup with Dr. Shah at MD Anderson.  I will have blood work done tomorrow, and then I’ll see Dr. Shah Thursday at 9:30.  It will be interesting to see what my blood work shows.  Hopefully he can give us a better idea of when/if we can start treating the actual cancer – the multiple myeloma.  I’m ready to get this over and done with and get back to living life & feeling good.

On another note, some people know this, but I have had to step away from my position at the church for now.  I was only managing to be able to work 1-2 days a week & then would be out the rest of the week dealing with either running fevers or fighting pain.  The days I did work, I would be exhausted by the time I got home.  I was walking in the door & walking straight to the bed.  That’s just not a fun way to live.  Plus, it wasn’t fair to the church because they couldn’t depend on me to be there.  So, please pray for all of us as we go through this process.

Well, I guess that’s it for now.  If you have any questions, feel free to comment & ask them.  I’ll do my best to answer & if I can’t, I’ll ask Dr. Shah when I see him on Thursday.

Thank you everyone for caring so much about what’s going on with me.  Your prayers & good wishes are a blessing!

My son...so proud!

No news is good news...I guess...

I apologize for not updating in a while.  There really hasn’t been a lot of change at this point.

I had the first Immune Globulin infusion on Friday, May 11^th.  It took 6 hours.  I felt really good the Saturday, Sunday & Monday following the infusion.  Unfortunately, I think I over-did it those 3 days, because I crashed & burned & ended up down sick.  I’ve been up & down ever since then.  Really frustrating…for me & I’m sure for my coworkers.  I hate letting them down & causing them problems by my constant absences.

I have the 2^nd Immune Globulin infusion on Friday, June 8^th.  I have learned my lesson & plan to take it easy right after the infusion & pray that I have better results this time.  Please join me in that prayer.  I hope to feel better so I can be a better daughter, wife, mother & coworker.  Knowing God is still in control is the only thing that gives me peace in the middle of the storm.

Hurry up and wait...

I was blessed to see Dr. Cole, my doctor here in Tulsa, today.  He is a wonderful doctor & I am beyond thankful that God has placed him in my life.   I knew he would be able to “dumb down” my results from Houston & he did not disappoint.  I feel like I have a much better handle on the situation now. 

Dr. Cole said that he agreed with Dr. Shah that we did not need to do treatment at this point.  He said that as I don’t have the bad symptoms that I mentioned in my last post, we shouldn’t do treatments.  I shared with him how that seemed almost like waiting until I had 3rd degree sunburn to put on sun block.  He laughed and said that they would be monitoring me closely by doing blood work every 6-8 weeks and he assured me that we wouldn’t let it get that bad.  He said that treatments would actually be like putting on sun block before going outside, but that the sun block had acid in it.  They are that debilitating.  He did not want to put me through that unless it was absolutely necessary.  I can fully appreciate that! 

We then talked about how I keep getting sick & how it is causing me problems at work.  He has scheduled me for an intravenous Immunoglobulin G (IgG) infusion a week from today.  It will take 6 hours to do.  I’m planning on taking stitching & my Kindle to entertain myself.  Hopefully I get lots of good stitching in.  If it’s not possible because of the IV, I’ll for sure get lots of good reading in.  I’m OK with either.  We will then do another IgG infusion 4 weeks after the 1st one. Dr. Cole will order blood work to see how I am doing and if we need to do more.  I am praying that the infusions do what Dr. Cole thinks they will & that I’ll feel better soon.  I’m sick & tired of feeling sick & tired. 

So, we are in a hurry up & wait mode to see how I am doing before any treatments are done.  Hmmmm….. I’ve never been the most patient person there ever was.  Think God is trying to teach me something?  I’m thinking the answer is yes and I better pay attention & see what that is…patience?...faith?...something else?  Guess I’d better buckle up & hang on for the ride.  Knowing that God is behind the wheel makes that a WHOLE lot easier.

All the news that's fit to print...

Well, I finally heard from Dr. Shah at MD Anderson.  He said that I technically have what he would call Smoldering Myeloma.  It is a slow-growing type of myeloma  He said that 30% of my plasma cells show signs of myeloma, yet I don’t have any symptoms at this point (lytic lesions {thinning spots in bones}, elevated calcium in the blood, & kidney problems).  He said I will have to have blood work done every three months to check calcium levels & kidney function.  Plus I will need x-rays done every 6 months to check for lytic lesions. However, he said at this time we will not be doing treatments.

In a way, that doesn’t make sense to me.  That almost sounds like waiting until you have 3^rd degree sunburn to put on sunscreen.  However, as a couple of friends pointed out, that may mean that it is currently at remission type levels.  Or as my friend Lorie said (in line with my analogy), it would be like putting sun block on when you aren’t planning on going outside.

The other thing Dr. Shah talked about was possibly giving me intravenous IgG (a component of the immune system) to help me deal with my recurrent fevers & infections.  I’m not really sure what all that involves, but Dr. Shah was planning on calling Dr. Cole, my wonderful doctor here in Tulsa, to consult about that.

My plan right now is to go over all of this with Dr. Cole when I see him this Friday.  He does an amazing job of “dumbing down” all that medical jargon to help me understand it better.

That’s all I know at this point.  I will update again this weekend after I talk to Dr. Cole on Friday.  In the meantime, if you have any questions, don’t hesitate to get in touch.

Home again, home again, jiggety jig...

We made it home today.  We were a little worried that the wild weather we're having in Oklahoma would delay us, but we slipped in between storm systems.  I'm thankful for that.

For some reason I'm considerably more tired than I expected to be. I'm sure it's a combination of the emotions & stress of the last few days along with travelling today.  I just feel really wiped.  I'm also kind of achy in the 2 spots where they did the bone marrow biopsies.

I'm so happy to be home & be back with my kiddo. I got a huge hug from him at the airport today.  It was pretty cool to have a 16 yr old boy give you a long bear hug in public & not care who saw him.  I am also thankful for my Mama & her wrangling him while we were gone.  She's the BEST!

Even though it's a little blurry, I have to share a picture of some of my favorite people in the world:

Brian's "little" brother & his wife & girls live an hour & a half outside of Houston.  They came & went to dinner with us our last night in Houston.  It was such a blessing to see them.  It's been too long.

Also want to share something God reminded me of recently.  When I learned I was going on this cancer journey, I was going to get some lunch & I saw a bumper sticker that reminded me of one of my favorite songs.  I hadn't heard it in years.  The first verse & chorus go like this:

BECAUSE HE LIVES 
God sent his son,
They called Him Jesus;
He came to love, heal and forgive.
He lived and died to buy my pardon;
An empty grave is there to prove my Savior lives.

Because He lives

I can face tomorrow.

Because He lives

All fear is gone.

Because I know He holds the future;

And life is worth the living

Just because He Lives.

 

 

It also reminded me of a cross stitch my sweet friend Milly did a special charting for & was willing to share with me:

I am so thankful that because my Savior lives I can face tomorrow with no fear.

Ow...just...ow...

Did you notice the subtle difference in this post's title compared to yesterday's? Yeah, today was SERIOUSLY not fun.

Between 6:30 & 11:00 am I had 4 tests run.  I started off with 2 CT scans.  The iodine contrast in the IV was interesting to say the least.

The worst was the bone marrow aspirate & bone biopsies.  Yes I said biopsies...they did 2 of those, 1 from each hip.  I understood they would at least give me at least an anti-anxiety med, but they gave me nothing.  Even during the first one I had in Tulsa that caused me so much pain they had given me an anti-anxiety med, and that one caused so much pain they had to stop. I had a massive meltdown & started bawling. I was so scared.  The ladies who did the procedure were so sweet & understanding.  They took extra steps to use extra lidocaine to try to make it as comfortable as they could.

After that the fine needle aspirate they did was a breeze, but I was really emotionally exhausted.

The good news is that at this point all my testing is done!  Hallelujah!!!!!  In spite of my meltdown, I know God has walked before me through this week & helped me through.  Also, my sweet Brian has been my rock.  This would have been so much harder without him by my side.  I couldn't ask for anything more!

When you get right down to it, in spite of this thing called cancer, I am one blessed lady.  I am married to my best friend.  I have an amazing, tenderhearted & caring son who makes me laugh every day. My Mama, in-laws & entire family support me unconditionally.  I also have awesome friends who I know are lifting me up in prayer every day.  How can it get much better than that?

We made it to Houston...

Well, we made it to Houston.  We had quite the adventure getting here.  Our flight was 20 minutes late leaving Tulsa.  Then, when we were about 20 minutes outside of Houston, a lady on our flight had a seizure.  So we had to wait for paramedics to come in & take her off the plane before we could get off the plane.  She seemed to be doing better as they took her off.  Praying she's doing better now.

We are in a very comfortable hotel room 4 blocks from MD Anderson.  We were able to get a room with a small kitchen, so we found a grocery store & bought breakfast, lunch & snack foods.  Hopefully that saves us a little money while we're here.

We're taking it easy this evening.  We have to be at MD Anderson at Noon tomorrow.  I know we'll see 2 nurses  & then my doctor.  Beyond that I have no idea.  But God knows & that's all that matters.  I know He'll take care of all that is to come.

Thank you for your continued prayers, friends.  We feel every one of them!

South bound and down, loaded up and flyin'...

That's not exactly how the song goes, but it applies to us next week.

I received a call from MD Anderson this afternoon & I am scheduled to meet with Dr. Shah at the hospital a week from today, Tuesday, April 10th.  Brian is going with me  I was told to plan on us staying there through Friday.

I feel excited & a bit nervous all at the same time.  I'm excited to get moving on this & figure out what treatments will be.  However, I'm a little nervous about how I will handle the treatments.  The comfort in the midst of the storm is knowing that my precious Lord already knows what my treatments will be and He will care for me no matter what.  Plus, with my guys & my friends & family by my side, I couldn't be in a better place.

My prayer at this point is that we can get all the travel arrangements made as quickly as possible & get everything lined up to take care of both of our jobs while we are gone.

Thank you for all your love, support & prayers, dear ones.  We love you so much!

My new normal...

Tired bordering on exhaustion seems to be my new normal. The blessing is that God is constantly giving me the strength to keep going & do the things I need to. I'm hoping to hear when I go to Houston some time next week.

One step closer to Houston...

Today I was able to schedule the PET scan that my doctor here wants me to have before I go down to MD Anderson Center in Houston.  Now I just need to ask for prayers that my insurance will cover it.  It seems they are balking on that. I am so thankful for the staff at Cancer Care Associates who are still fighting with them on my behalf.  They are such a blessing!


Also I want to make sure all of you know what a blessing your comments & messages of support and love are to me.  I may not be able to respond to each of them, but they are such an encouragement & joy for me.  I can never thank you enough for that!

God is at work...

Last night as I was attempting to go to sleep, I was praying that God would reveal Himself to me throughout this journey so that I could share what He was teaching me.  As I was praying I heard, "I already have."  Suddenly I realized that over the last year He has been giving me scripture after scripture of His hope & promises.  I have been saving them in my phone.  I thought I might share them with you.  My prayer is that they will help you as much as they help me.

No one will be able to stand against you as long as you live. For I will be with you as I was with Moses. I will not fail you or abandon you. (Joshua 1:5 NLT)

So be truly glad. There is wonderful joy ahead, even though you have to endure many trials for a little while. These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold—though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world. (1 Peter 1:6, 7 NLT)

"The LORD your God is in your midst, A victorious warrior. He will exult over you with joy, He will be quiet in His love, He will rejoice over you with shouts of joy. (Zephaniah 3:17 NASB)

For I know the plans I have for you," says the Lord . "They are plans for good and not for disaster, to give you a future and a hope. (Jeremiah 29:11 NLT)

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. (2 Corinthians 4:16-18 NIV)

So do not fear, for I am with you; do not be dismayed, for I am your God.  I will strengthen you and help you; I will uphold you with my righteous right hand.  (Isaiah 41:10 NIV)

The Lord upholds all who fall and lifts up all who are bowed down. (Psalm 145:14 NIV)

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you. But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind. (James 1:2-6 NIV)

I remain confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord. (Psalm 27:13, 14 NIV)

"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." (John 16:33 NIV)

Hear my cry, for I am very low. Rescue me from my persecutors, for they are too strong for me. (Psalm 142:6 NLT)

No temptation has overtaken you except what is common to mankind. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can endure it. (1 Corinthians 10:13 NIV)  I think of "temptation" in this verse as also meaning any trial or struggle we may face.

Do not fear, for I am with you; Do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, surely I will uphold you with My righteous right hand. (Isaiah 41:10 NASB)

And so it begins...

Well, if you don't know already, I have been diagnosed with multiple myeloma.  It's a blood plasma cancer.  My doctor says that I barely meet the criteria for the diagnosis, but I do meet it.  He also said if he had to give it a stage, he would say I'm barely Stage 1.  In the next 2-3 weeks, he's going to have me go down to MD Anderson & consult with a good friend of his who is a specialist in multiple myeloma.  Then we will go from there.

I don't know what the next few weeks or months will hold, but I know who holds those next few weeks or months. Do you know Him?  He's my Lord & Savior Jesus Christ.  He has me in the palm of His hand & that's where I plan to stay.  If you don't know Him, let me know & I'll introduce you.

I hope to be better about updating this blog than I was about writing in my diary as a girl or a journal as an adult, but we'll just have to see.  I may just end up posting when something big-ish happens, but my thoughts are that I would also like to post about what God reveals of Himself to me on this journey.

All I ask is that you keep me in your prayers.  I figure if enough people are bugging the Father about me, He'll eventually get so tired of us He'll give us the answer we want.  OK...maybe He doesn't work quite like that, but I do covet your prayers.

If you have any questions, please don't hesitate to get in touch with me.  I'll do my best to answer them & if I don't know the answer, I'll try to find out for you.

Please know your love & prayers are sustaining me through this.  I have that "peace that passes all understanding" and I am so thankful for that!