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!!

Actual Day #4

Since I didn't wear my prosthetic on Saturday or Sunday due to pain, etc. I am not going to be counting them. Therefore, Monday, January 9, would have been day #4.

I was hesitant to put on the leg after all the pain and soreness that plagued me in the previous days, but after much urging and encouragement from my prosthethis I went ahead and put it on around 2pm. I wore the leg until 4pm. I did some light housework while wearing and some work from the computer as well, so it wasn't overly exhausting.

After taking a break for a few hours I put it back on in the evening and was only able to wear it for an hour. I hated to take it off so early, especially after regressing over the weekend, but I had to do what I had to do.

It was a better day all and all. It helped a great deal that I hadn't worn it for two days, so the pain and soreness had subsided.

It is of utmost importance that I wear my leg everyday, even if I can't do it for long, I must just put it on.

Day #4

Went to bed early last night. I was in a good bit of pain. I was so excited to have no alarm on Saturday.
4am: Woke up. Lots of pain, muscle spasms and cramps. So much for sleeping in. Up from 4-9ish in lots of pain. Fell asleep and woke up at 1pm. Oops. This is taking a lot out of me apparently.

Muscle pains, spasms, exhaustion=No leg today.

Trying again tomorrow.