New Year, New Me (prayerfully)

It's been a long time since I've written on here and I really left things hanging, didn't I?

Well, let me give you the cliff notes version of the last six months:

After being diagnosed with MDS I underwent six months of chemo. It was very mild in comparison to what I went through with the osteosarcoma and I was pretty much able to carry on as normal. Thankfully I completed my last round of chemo on December 2 and now my counts are in the "normal" ranges. My Dr. said "You responded better to this treatment than we could have even hoped for! I've never seen anyone respond so well!" <---------- That was God, y'all! He did it again. I totally don't deserve the many blessings He gives, but I am so thankful for them and His continuous grace!!

Now it's the end of January, we just got back from one of the best vacations I've ever had and tomorrow is *my* "new year!"

Tonight we start our annual revival at church and boy do I need it. Without going into a lot of detail I will share with you that I've struggled a lot spiritually since going into remission. I think that a lot of it has had to do with the "stuffing" I did with my emotions during the hard journey with cancer, so therefore, I've had to sort through a lot of pain, anger, resentment and bitterness the last year and a half. I still have days when I struggle and am depressed, but I feel like with God's help I am finally coming out of it.

I'm completely ready to clean the slate, start fresh and renew my commitment to the Lord.

I'm excited. I'm happy. I'm overwhelmed with grace. I'm ready to run this race.

Last year I read the life changing book 1000 Gifts by Ann Voskamp. If you haven't read it, well, what are you waiting for? GO! Read!! She keeps an amazing blog A Holy Experience. I enjoy reading her posts and always come away with encouragement and conviction. At the beginning of the year she set out to challenge others to memorize Romans 1, 8 and 12. I'm accepting that challenge and working on memorizing them with her. It's just two verses a week. I've even made the little books and have a friend and my son doing it along with us. If you are interested, you can read more about it here: http://www.aholyexperience.com/2013/01/the-1-habit-god-really-wants-for-your-new-year/

If you are gonna get in on the fun comment and let me know so we can encourage one another. Also, check out the Scripture Typer website. My son and I have been having a blast with that!!

I've got a lot of other exciting things going on, but I just wanted to take a minute to share this.

I'm looking forward to 2013. I think this will be our best year yet. A year of seeking him. A year of counting gifts. A year of hiding His word in our hearts. A healthy year. A peaceful year. A year of joy.

Rx: Pray, rest, transfuse, pray & repeat

Since my last post I've completed another round of chemo and am well on my way to recuperating from that one. Yesterday I was blessed enough to receive a blood transfusion to help me along in the recovery process. I am hoping and praying that by tomorrow or Sunday I will be feeling a bit perkier. In the mean time, I've taken the time to rest as much as possible. I've been grateful that in starting our homeschooling journey this week (Monday was our first day of school) it has allowed for me to be home, stick to a schedule and therefore get the rest I need and the glorious peace that comes from just being home and having the ability to take it easy.

The Lord has been working greatly in my heart and life lately. I am so grateful for this illness that has caused me to once again slow down and refocus. Obviously I wouldn't have chosen to be sick, again, and go through chemo, again, but I know that the Lord has a purpose and plan in this and I am resolved to allow him to work in my heart and life to bring forth his will. I want to obey and submit and find out what lessons there are in this valley. I am desiring to grow while I'm here in the valley of sickness and I rejoice in knowing that things could be so much worse. I count myself truly grateful for where the Lord has me and really for just *being* here.

Right now it seems the Lord is really working on me in the areas of showing me His love for me, breaking me of people-pleasing and reminding me that it's only in HIS strength that I can win victories in my life. These are hard lessons, but I am so grateful for them. I want to take the time to share with you how He's working in my life with each of these lessons, but I really need more time to work them out in my life before I can share and hope to bless anyone else. I still have a long ways to go.

I can though give you a glimpse of the last issue. I've felt really discouraged over the last several years for not being farther along in my walk and struggling with the same battles over and over. It is frustrating when I can't seem to win a victory in an area of my life and it's something I have to keep coming back to and struggling with. Just when I think I've hopped forward it seems like I figuratively turn the other way and run back and pick up that very thing in which I was trying to get victory over in the first place. Paul seems to understand what I mean in Romans 7 when he says "For the good that I would I do not: but the evil which I would not, that I do." I'm glad that I'm not alone in this struggle, God's word is so comforting. I've realized though the main reason I struggle and fail; I seem to lean on the Lord for a time in breaking/building habits or getting victories in certain areas, but then once I think I've gotten past it so to say I think to myself "I've got this!" Then I end up trying to conquer habits or areas in my own strength and not leaning on the Lord in prayer and scripture to continue to help me in that specific area. It's hard and a lot of work on my own. It's stressful and leaves me feeling discouraged, despondent and like a complete failure. I almost don't even want to try anymore. On the other hand, when I lean on the Lord it may still be hard, but in HIS strength I am able to persevere and it takes the pressure off of me to say "Lord, I just can't do this own my own, I need your help to get through and continue to do the right thing. Please, just help me here." And continue to pray that way until doing the right thing becomes second nature. I also seem to discount the importance of praying about every. single. thing. I was recently reading a book on parenting and the author mentioned praying about something I would have never thought to pray about. It helped me to realize that I am truly not committing everything to the Lord in prayer and that's the big reason I am failing in my own efforts so often. The Lord does care about the little details in my life and He does want to help me work things out and order my days and such. He is my husbandman and he wants to be treated as so, involved in my life and communicated with often. He desires for me to come to Him. I'm sure many of you know all of this already, I'm just a little slow and see things differently at different times I guess. I'm just so glad that He is helping me to learn and grow.

I've purposed to keep a prayer journal of all the little and big things that I need help with, need to work on, figure out, make decisions about, etc. Instead of going to people for their advice or opinions I am first going to God, the One whom I should have been turning to all along. Yep, I'm slow.

I'm glad He doesn't expect perfection from me and that He understands and knows me better than I know myself. I am so grateful for His mercy and grace that renew themselves daily. I can't quite grasp that, but I'm trying to. And I'm also trying not to be so hard on myself.

I’m just hopping through this journey day-by-day praying for enough light to show me the way

It’s taken some time, but I am ready to blog again about my health, what is going on in our lives and how the Lord is ever working through the valley’s. This is a long one!

Update on My Health & Dr. Appts:

The beginning of June took me to Gainesville to meet with a specialist regarding my Therapy-Related Myelodysplastic Syndrome. I thought that, and I’m not sure why, this appointment would be a sit down with the specialist to go over my treatment options and to discuss in depth and develop a chemo protocol that I would take back to my doctor here locally. Instead, we talked in depth for about an hour regarding the options to have either a bone marrow or stem cell transplant. I got a lot of really great information regarding those two options, but we didn’t delve into the subject of treating with this low-dose chemo, Vidaza, and only discussed it briefly. 

I have been in remission for one year with the osteosarcoma and because of my original diagnosis and the 25% cure rate that the doctors believed I would have, the MDS specialist does not recommend that I pursue a transplant of any kind as of right now. The main reason is that my combined cure rate for the osteosarcoma & MDS is about 10%. A transplant is such a serious and extensive treatment plan that he feels as if it would do me more harm than good right now. 

Thankfully, my MDS was caught early and the doctors, both the specialist and my local oncologist, believe that the Vidaza, a low-dose chemo that helps bone marrow regenerate itself, is the best avenue to pursue at this time. I was already convinced that was the route that I wanted to take first, so I am glad that the doctors and I are of one accord. 

It’s hard talking to the doctors about cancer and cure rates and life expectancy. The doctors believed in March of 2010 that I wouldn’t live more than five years and that most-likely my cancer would come back quickly even once it was resected. I’ve been “cancer-free” for over a year now. It is debatable as to whether or not the MDS can be considered a form of cancer, some medical professionals do and some don’t. Initially, in talking with the doctors, I just felt like all they had to say was doom and gloom. In talking with the specialist I realized that this was a little more serious than I originally thought. This will turn into Acute-Myleoid Leukemia, so they say, eventually without the Lord’s intervention in giving me yet another miracle. My mother died of AML at the age of 42. 

My Thoughts on All This Health Stuff:

Leaving the doctor in Gainesville that day, I had the overwhelming feeling that I should just take off and travel, I really didn’t want to go home and face chemo and being sick and all that another diagnosis entailed-again. Yes, this is scary for me, not because I don’t trust the Lord, not because I am insecure regarding my eternal future, but because I have a son to raise; a son that has only ever known one parent. I want desperately to not only raise this child, but to be there for him in adult hood. I can’t tell you how deeply I miss sharing things with my mother now. How often I wonder what our relationship would be like, how frequently I wish I could just call her, visit or chat on the phone. However, I would be happy at this point to just have these next six years to raise my boy; to spend cherishing moments with him. I beg for more time, but in the end I know that God’s plan far exceeds mine and I do pray His will be done. I think the most difficult; the scariest part of parenting is imagining life without your child or leaving your child behind. It is a reality that is ever present in my mind this going on to my eternal home and the young man staying behind. I don’t know how to rectify that. I don’t know how to completely release this Goliath fear of mine and hop on onto the mountain of reckless abandonment in trusting the Lord. I’m just hopping through this journey day-by-day praying for enough light to show me the way. 

I am going to digress here; I have really struggled with some big things over the last year. I’ve wrestled with spiritual issues, quietly carried a broken heart and spirit and asked the Lord again and again why He allowed me to live when there are others I know personally that went home to be with Him. I know that I don’t deserve to be here, but grace is getting what we don’t deserve. Still, I feel like I am living on borrowed time. I so often fail. MAJORLY. I disappoint myself and Him daily. I’m not a great Christian or even a good person. Honestly, I dislike myself most days. About a week, maybe two, before I was diagnosed with MDS a dear friend recommended the book 1000 Gifts by Ann Voskamp to me. It was impressed upon me to immediately purchase this book. As a matter-of-fact, she sent me a text and the minute I read it I picked up my Kindle to search for the book and see how much it was. It was only $3.99 at the time, so I purchased it right away and began reading it that day. This book is all about gratitude and living with the purpose of seeking to be thankful in all circumstances. I was awashed anew with Christ’s love for me as I read through the pages of this book. It then occurred to me, actually it was more like a huge neon sign constantly flashing in my mind, that I had forgotten to be grateful. How could I? After all He has done? After all He has brought me THROUGH? I was reminded of when I was first diagnosed and I made a list of my many blessings. I always meditated on this passage of scripture

“ Finally, brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things.” Philippians 4:8 and then purposed to constantly seek those things in which I should think on. Sin took me away from my focus. I am so thankful for my dear friend that recommended this book, 1000Gifts, which God used to bring my life back into focus. I can’t tell you what a difference the challenge of ever counting gifts has made in me mentally, spiritually and emotionally. It is like the difference between life and death.

In the past few months since I have read the book I’ve felt release, renewal and revival. I’ve been constantly reminded that the doctors don’t know everything and the Lord is still in control and on His throne working to complete the work that He began in me. 

Treatments:

My first round of chemo was June 24-July 1^st. I’m praising the Lord that this time all the chemo is outpatient. The transfusions last about 1 ½-2 hours and I go every day for 7 days. I started feeling it by the sixth day and felt extremely fatigued and like I had major brain fuzz (I don’t really know how to describe this feeling; dizzy, fuzzy, weird, not myself, out of my mind, disconnected from my body?) from about June 30^th-July 11^th. About 12 days straight. All in all it wasn’t too bad in comparison with what chemo was like last time. Still though, it is a huge adjustment that requires me to slow down. I was perhaps a bit too hopeful that I would carry on as normal in going through this and therefore have pushed myself too much to have a “normal” lifestyle. I start the next round on the 23^rd of July. I am praying and hoping that this next week will be a really good week for me, but honestly the past few days haven’t. The brain fuzz has cleared up a bit, but now some other issues are surfacing. 

Detailed Prayer Request:

I hate to complain when things could be so much worse, but I do really need to ask for prayer for myself and my son. I am having a really hard time adjusting to "chemo life" again. I'm finding it's very hard to do day-to-day things like cooking without getting really confused and making a disaster of everything. Yesterday I exploded chocolate all over the kitchen, which was actually kind of funny, but today I spilled about 1/2 gallon of milk everywhere in the kitchen then slipped and fell really hard in it on my way to ask for my son’s help to clean it up. Right now I am in so much pain. Every morning when I wake up it is a surprise as to how I feel, so it's also hard to plan things. Most of my friends probably think I am being incredibly flaky. I'm also having insomnia pretty badly. It seems like every other night this past week I've not been able to sleep until after 4 or 5 am. We are trying to get ourselves into a structured routine to prepare for homeschooling in which we will start on August 6th and now I am just really worried concerned about how I am going to manage everything. I know that *I* can't manage, but it will be Christ’s strength getting me through. I also know that I need to slow down even more, but like I said, I just hate living a "sickly" lifestyle.

In all of this, I know that I am so blessed though. My son is such a sweet, sweet boy. He is blessing me in a way that blows my mind. He helps so much and is so kind and loving to me when I get upset because I've done something silly like spill the milk. Whoever said you shouldn't cry over that apparently never spilled really expensive raw, organic milk and cream that they were going to use to make their sweet child ice cream with. Or breast milk, not that I've spilled any of that recently... Anyway, last time I went through chemo I couldn't even care for myself. This time I can, and for that I am SO grateful, but I am learning that I just can't do quite as much as I had been doing; this would seem like a no-brainer, I know, but keep I mind that I have slowed down considerably since about February because of the fatigue that I’ve been dealing with. I am so grateful for so many things, even for this trial because the Lord has already blessed me in ways I can't describe or wouldn't have been blessed if I hadn't gotten "sick" again. I am just asking for prayer to do what is necessary and to know when to rest, to learn how to care for myself during chemo and how to mother my son in a way that teaches him about life during this storm and trusting the Lord, to allow the Lord to work in my heart and life and trust Him with my days- even when I spill the milk, burn dinner, fall many times or land myself in the hospital-again. 

What Else is Going on You Say?

Now that I’ve got all that off of my chest I hope to blog more frequently. I seem to be having so many thoughts lately and need the therapy that writing offers. Funny thing is that I actually just sat down on Facebook to type out a prayer request to a prayer group that I am a member of and it became so long that I brought it over to a Word document and just kept typing. Word says I’m on page 5. Figure I’ll turn it into a blog post at this point! If you’ve read this far thank you! Leave me a comment so that I can thank you and pray for you individually!

Some of you may know that I became a Pampered Chef consultant in October of 2011. I love TPC and I’ve enjoyed my business so thoroughly. Unfortunately, I had to begin taking a step back in April due to my health. I haven’t been doing any shows aside from a catalog show here or there. That is probably for the best considering my confusion cooking in my own kitchen and the disasters I keep having. I miss it though and I am praying that once I get another round or two of chemo under my belt and know more about what to expect in the way I respond to the treatments that I will be able to at the very least schedule two in-home shows a month. 

In January the Lord began working on my heart regarding my son’s education. He has attended a Christian private school since 1^st grade and he just finished up with 6^th grade. I have two good friends whose eldest sons graduated high school this year. That coupled with my health challenges and the Lord’s persistence has lead to me making the decision to homeschool. It is a terrifyingly awesome journey that we are going to embark upon. I knew from the beginning that the idea was completely of the Lord and the more I plan, research and discuss it with my son the more I am convinced that this is completely of the Lord. This may very well be the best decision aside from salvation that I have ever made for our family. I am so very excited to have my DS home with me every day and to have the great privilege of home educating him. The same good friend that recommended 1000 Gifts to me (she’s really awesome & smart!) turned me onto Charlotte Mason. After doing some research I determined that her methods are exactly what I envisioned for our homeschool adventure. Reading Charlotte Mason’s writings have been so incredibly convicting and eye opening for me. I’m enthralled with her philosophies and challenged in a way I have never been. I honestly think any parent could benefit from reading her 6 Volume work, not that I’ve read all 6 yet-but I am telling you they are some of the best child rearing books I’ve ever read! We’ve got all our books and curriculum planned and purchased and we will begin school on August 6^th. If we didn’t have so much going on the next two weeks I would start tomorrow. DS is excited, or as excited as a 12yo boy who has had a traditional education thus far can be to start school ;) I just can’t wait to see how he grows this year. I can’t wait to see the love of learning spark in him and to share such an amazing experience with him. I’m pretty excited about learning right along with him!

DS started sailing camp at the local marina last week. It is daily from 1-4 and goes through next week. He is loving it! The boy loves to sail and is well on his way to becoming a “salty sailor!” Once sailing camp is over we will have VBS at church. I am praying that I can help out again this year. I will have chemo that same week, so I would appreciate your prayers there as well. After that it will be August! Where does the time go? It’s amazing how we blink and ½ a year is gone. 

The formatting went all wonky when I pasted this into blogger. Oops, don't know what went wrong there! Sorry for the super long post! 

Stay tuned for counting days of gratitude... won't you count with me?

<3 Jill 

7. Clarity

I've partaken in the challenge to count to 1000. 1000 gifts. 1000 blessings. The opening of my eyes wide to the beauty of life and the world and those around me. Today as the doctor delivered yet another diagnoses, as the words ran together and blurred in my mind and I began to lose my grasp, in an instant, everything came into focus. 7. Clarity. That I was coherent this time. That I understood this time. That I was able to call my closest friends and family this time. That I can see the blessing, the good. That I know this is just a bump in the road. Clarity. Perspective. Both blessings in which I am still praising Him for. Everyday I will count these gifts. I will continue to 1000. And when I lose my focus, I will look back on the list to recount these things. Phil 4:8. I will think on these things.

This is what I know:
~I have been diagnosed with Therapy-Related Myelodysplastic Syndrome.
~This is a disorder that is a direct result of the harsh chemo that I received during my cancer treatment.
~I am NOT dying. I do NOT have cancer. I do NOT have leukemia.
~However this can be a precursor to leukemia. It is rare for people to have this disorder after receiving chemo. As a matter of fact, less than 5% of people end up with this. It would seem that I have a genetic pre-disposition that prevents my cells from regenerating properly as evidenced by the fact that my mother went through something very similar. I would bet that she had this and never knew it and, therefore; untreated it became leukemia. The good news is that with my screening every three months, this has been caught in the early stages.
~In a nutshell, my bone marrow was so damaged from the chemo that it is not producing enough healthy blood cells. Good news is that I am not producing BAD blood cells either. This has caused me to have progressive pancytopenia- basically all of my counts are VERY low.  This explains the severe fatigue that I have been experiencing the last several months as well as a few other things.
~There is a treatment for this disorder. It requires chemo. The chemo will not be as bad as last time. On a scale of 1 to 10, 1 being the mildest chemo they can give and 10 being the most intense, last time I received somewhere between an 8-10 depending on which chemo was being administered at the time. This time it will be more like a 3-5. This means I should be able to care for myself and Jarred which is very important to me. As a matter of fact, I told the doctor that if I had to go through anything like last time, I did not want chemo. He has assured me that it will not be like that. Actually, the see this more commonly in people aged 50-60 and they do quite well. They don't get sick and are able to carry on alright. Considering that I am much younger that is working in my favor. I may not even lose my hair, but that is the least of my concerns. I can do bald. I can't and won't do sick and incapable of caring for myself.
~I need to go to Gainesville to meet with a specialist in this very area. I will hold off on doing this until my son is done with school.
~In the meantime, I have labwork, some doctor appts and some possible transfusions of blood and platelets.
~I go back to the doctor on May 23rd to begin formulating a game plan.

As always, your prayers are much appreciated. I do know this is well: God is in control. This certainly didn't take Him by surprise. I trust Him with my future implicitly. I am not worried, stressed or scared.

His grace and peace amazes me. I don't know why it still takes my breath away. I've been here. I know the valley well. It seems to be in the valley where I flourish and I am OK with being here again. I hope that when I do come THROUGH this valley that I will be strong enough this time to stand on the mountain without losing sight of all the beauty, miracles and grace that surrounded me in the valley. Tonight as I pillow my head, I will sleep the deep sleep of peace in my Father, for I know that He has me in His hands and there is no better place to be.

It Doesn't Matter

This is something that I wrote in the wee hours of the morning. There is a lot of back story as to what led me to write this NOW, which I may share one day, but I think that any one that has followed my blog the past couple of years will understand :) I hope you like it!

It Doesn’t Matter

It doesn’t matter that this is not what I had planned because this is what You have planned for me…

It doesn’t matter that I’ve been broken into shards because I’m picking up the pieces and giving every one of them to You…

The disappointments, all the hurt and all the pain no longer matters because You’ve let Your love and grace rain down and wash me clean once again…

It doesn’t matter where I’ve been it only matters that I will follow…

It doesn’t matter what it takes to get me to open my eyes and see the truth, to see Your light, to feel You here right by my side…

It doesn’t matter what it takes I’ll go through it all again just to feel You near, to know Your love never fails and You’ll never let me go…

And as You permeate my soul it doesn’t matter what You had to take away…

Because now Your beauty is everything I see, the gift You have given to me is far beyond anything I could have hoped for…

So Lord, take it all, all of me, all the broken pieces you see and make me holy…

Aside from you, my Lord, my God, it doesn’t matter…

I trust you, Lord

I love you, Lord

Lead me, Lord

Copyright: Jillian Arnould 2012

Where Does The Time G?

Goodness, it's February already? Well, time just flies by quickly!

I know that I promised to try and update y'all daily on my progress with the leg, but life has gotten hectic - in a good way- and honestly, I didn't think you all wanted to hear what's really going on in this head of mine :)

I want to say first, that I am so thankful to be at this part of the journey, I never take that for granted. I am very thankful for the gift of life I have been given. I went in for my 3 months scans again a couple of weeks ago and everything is still clear. PTL! Nothing concerning and I'll go back in April.

The leg has been a challenge, but I knew it would be. What it didn't know is that my pain level would increase as a result of wearing it and that it would be THIS difficult and exhausting not just physcially, but mentally.

I am working on wearing my leg daily, I have PT multiple times a week and right now my goal is just to wear it for longer periods of time and to put one crutch away. I am trying hard to focus on the big picture here. I know that I hate this, yes, I do HATE it, right now, but before long I will (so I'm told) not know how I did without this thing.

Ok, so there's my quick update for those of you wondering. :)

Day #5

This morning I had an appointment with my prosthethis at 8am. I put on my leg at about 7:30am and we left the house to head towards FWB. After being so discouraged over the weekend and perhaps being a little hard on myself, I am so glad that I had an appointment today. When I spoke with Dr. Jack yesterday he was so understanding and encouraging. He truly is a compassionate man and I am so thankful that the Lord once again provided me with a doctor with such expertise!

At the appointment he assured me that I was progressing well and made some adjustments to the brim of my socket. He suggested that I take it a little slower, but also urged me to ensure that I do wear my leg daily. My original plan was to come home and take my leg off, rest up, get it back on and go pick J up from school and take him to a Dr's appointment. I had so many errands to run and also had the chance to catch up with my sweet friend over lunch. It dawned on me on the way back from FWB that if I loosened the strap of velcro that fastens the socket it would relieve the pressure and pain that forces me to take the leg off. Of course, I can only do this while sitting or driving. Which is the perfect time to do so. It enabled me to keep the leg on for 8 1/2 hours!! Of course, the last hour or two I was literally dragging my leg, lol, but I made it through and I don't feel terrible..... yet....  Ok.... well when I got home and took the leg off I pretty much stayed on the couch the rest of the night. It's 10:30pm and I am quite sore. But it is manageable. I don't feel like giving up and I know that tomorrow I will put it back on :)

I start PT tomorrow at 1pm. Please pray for me! I know they are going to work me hard!! I am looking forward to it. I'm looking forward to the challenge, the extra exercise and receiving some training consistently.

I am going to finish a cup of tea and watch Downton Abbey, my new favorite show! Have a great night! I know that I will be resting well indeed!!