There must be a leak...

Last Thursday at my appointment with Dr. K., my platelet count was 617,000. A week later, on Thursday, it was 40,000. While 40k is better than 8k (which it was a couple weeks ago), it's still discouraging that I lost almost 600,000 platelets in only a week! I have started the steroid 'pulse' and am on day three of the nasty pills. They only come in 4mg pills (it's dexamethasone, not prednisone this time) so I get to take a handful of 10 each morning. I am allowed to spread them throughout the day, but since the large dose makes it harder to sleep, I prefer to take them all at once in the morning with breakfast. I'm going Monday (my last day on this round of steroids) to the hospital to have my count checked again. Then, I go Tuesday to have a bone density scan done to check for bone deterioration. I had a bone scan done a couple weeks ago, but I guess they are different scans. Nice of them to tell me that up front! I feel as though I've unwillingly donated my body to science sometimes!

Anyway, that's the news for now. I'll post more Monday or Tuesday after I get my count back.

Update

Ecc. 3:11: "God has made everything beautiful for its own time. He has planted eternity in the human heart, but even so, people cannot see the whole scope of God's work from beginning to end. "

So much to tell! Let me start by saying this: My faith has been stirred. Maybe it was the weeks of not being able to participate in church or church related activities, maybe it was the constant agonizing pain and/or the dopiness of the pain meds, maybe it was a combination of everything the last year + has held for me (and us), but I was losing my faith. I didn't stop believing in God or deny the fact that I believed Jesus is the Son of God, and he saved my soul, but I was losing my belief that God could really work a miracle in my life. That being said, here's the 'practical' plan for my health and the spiritual side of God working in my life and in my body.

Treatment: We have stopped the injections. While I was very disappointed and overwhelmed at the thought of them not working, I was VERY relieved because frankly, I couldn't handle the pain anymore. Between the pain and the pain meds, taking care of my husband, children and home was nearly impossible. I never left the house unless I didn't have a choice and the kids and I spent a LOT of time "snuggling" on the couch watching cartoons together - because I couldn't handle doing much else. I have a new respect for people in chronic pain. The longer it goes on, the more it wears on your mental, emotional and, if you aren't careful, spiritual state.

I went in on Thursday (with my wonderful Husband by my side) and met with my Doctor. My count was 617,000 which leads us to believe that if we could do small doses of something to stop destruction and do small doses of AMG 531 to cause production, we could have a good plan on our hands. However, until the AMG drug is FDA approved, the Doctors' hands are tied in how they're allowed to use it. Since we couldn't immediately go down to a small dose (requirements stipulate that it must be weaned down dose by dose), we decided to stop completely and try something else. If my count is 300,000 or less on Tuesday (i.e., down my more than half), we will start a round of 'pulsing' the steroid dexamethasone, 40mg for 5 days, then off for 3 weeks. We're going to try this for three months.

All of that being said, Tuesday afternoon, I went in for my lab draw and the study nurse had decided to hold off on my injection until my appointment on Thursday. On Thursday after my appointment (after it was finalized that I was off for good) I emailed my house church pastors to let them know we'd be able to start coming again. She emailed back and said that they had prayed for me/us that Tuesday night, which is not a coincidence that all of this happened the same week as the decision for my treatment to stop. Today, we were at church and there was an altar call for prayer for healing. Of course I jumped on it and as we went forward, Joel's cousin Shawn met us at the front (they're house church/lay pastors on the prayer team). He said that he had really had a burden to pray for me/us as he walked into church this morning and was glad that we were standing there together.

I can't say what will happen Tuesday, but I know this: God's timing is perfect.

What God Hath Promised

Yesterday my count was 567,000 and I didn't get an injection. I'm going in tomorrow to see Dr. K. and to make a decision about my treatment. The pain has gotten to the point where it's intolerable and I'm dependant on pain meds to keep it under control. I hate it. I hate it so much. It's not a benefit to anyone if the treatment is worse than the problem we're trying to control.

I should be happy and elated - my count is up and no injection leading to pain this week...but I feel very overwhelmed. To be honest, I feel let down that this treatment didn't work for me. Now what? I know my Dr. has the next steps of what she wants to try lined up, and I'm confident in her ability. Where my confidence is lagging is holding on to the promise that I dont' serve a God of statistics, I serve a God of miracles. My faith never wavered when Holly was on bedrest with her little girls, but for myself, in the midst of all of this, it's an overwhelming 'reality' that ITP, according to statistics, never goes away. It might go into remission for a short, or even long time, but it never goes away. I know I need to put away the statistics and get out the Word of God. I'm just so tired.


God hath not promised skies always blue,
Flower strewn pathways all our lives through;
God hath not promised sun without rain,
Joy without sorrow, peace without pain.

Refrain

But God hath promised strength for the day,
Rest for the labor, light for the way,
Grace for the trials, help from above,
Unfailing sympathy, undying love.

God hath not promised we shall not know
Toil and temptation, trouble and woe;
He hath not told us we shall not bear
Many a burden, many a care.

Refrain

God hath not promised smooth roads and wide,
Swift, easy travel, needing no guide;
Never a mountain rocky and steep,
Never a river turbid and deep.

Words by Annie J. Flint
Music by William M. Runyun

I still believe God is in control...

Today I went in for a platelet count check since they were down on Tuesday and we also left my AMG dose at 7. I have 8,000 platelets. I was sent immediately (well, with a stop off at home to change into comfy clothes) to Southwest Washington Medical Center to have a platelet transfusion and 80g of IVIg. Here's the awesome part: I didn't get to go for my massage because of my count being too low AND SWMC has changed the brand of IVIg they use. To the one that Legacy uses. The one that has to be run insanely slow and gives me horrible migraines. I've been in tears a lot today. I feel like I've been punched in the stomach. It was like one piece of bad news after another all day long today. We are so blessed that we have family around to help us though and Joel's grandma watched the kids this morning and his dad took over in the afternoon until Joel got home from work.
I still believe God is in control. I still believe there is a plan for my life and I have a destiny to fulfill. But honestly, a year later, I am starting to feel weary. I am literally physically exhausted and mentally and emotionally trying not to check out.
I'm going to stop being a wah-wah now and go to bed. I have another full day of IVIg tomorrow and my mom and dad are coming to spend some time with me at the hospital. That has honestly been the highlight of my day. I am so very happy that they are able to do that.

Massage Therapy - Mommyville just got a little easier.

My platelet count was down to 58k this week. Bummer! I went in on Friday for a mid-week (mid injection week) check because it was down to 75k last Tuesday. It was up to 193k on Friday! I breathed a little easier and had a good weekend with my kids and hubby. I am going in again this Friday because we left my dose at 7mcg, and since my count was down, my Dr. wants to check my count before the weekend to make sure it's gone up.

The good news for this week is that we're going to start trying massage therapy to combat the pain I'm in to see if I can depend less on narcotics for pain relief. I get to go in Friday for my first massage and am happy to announce that it's covered my my insurance! I'll be honest, if not for the pain, then for the fact that I am a mother of three children 5 and under, I am really looking forward to an hour long massage. Every week. My kids' pediatrician is also technically my primary care doctor (she's an internist) so she recommended accupuncture if the massage therapy doesn't work for me.

Livi had her 6 month well-baby check-up today (she's actually 7 months...we got in late this time) and is 14lbs 13oz and 25.5'' long. On the non-adjusted growth (so the curve for term babies) she's 15% for weight and 20% for height. She's doing great! She had her shots today and she REALLY let the doctors and nurses know that she was MAD. Normally, the boys would get their shots, I'd pick them up and calm them down and they'd be fine. We could get dressed, get in the car and they'd fall asleep. She screamed (Screamed, mind you, not cried) the whole time getting dressed, while the boys picked out stickers and all the way to the car. She's a fairly laid back baby, but when she's upset, she lets you know. Drama.

Insomnia

One of the wonderful side-effects of my injections (which, I just found out this week) is insomnia in 16% of patients. Wonderful. Nothing helps chronic pain like not getting enough sleep! Tonight, I'm trying to take it in stride and instead of laying in bed trying to fall asleep while my mind races around thinking of all the things I need to get done, I'm getting some of the things done! I just swapped a load of laundry, swept and mopped the downstairs floors, and unloaded and reloaded the dishwasher. Tonight when I do finally fall into bed, I hope to not only be good and tired, but also not have anything to think about because everything that I can be doing while awake is done!

Since I was in so much pain with my injections, my Doctor decided to take my dose of AMG 531 down to 7mcg from 8. Since my platelets were down on Tuesday AND we lowered the dose, I went in on Friday for another platelet check to make sure we didn't need to treat with IVIg over the weekend. Happylujah! My count was 193k!! I was very encouraged by this and almost skipped out of the office on my way to the weekend.
The pain is not much better this week with the lower dose. I am finding this week that I wake up (with no pain meds in my system) to stiff and painful joints. I have a hard time even getting out of bed most mornings. Once I am up, moving and have some Doans or Oxy in me, I start to feel better, but getting out of bed SUCKS.
My floor should be dry now, so I'm off to replace the furniture and finish up what I need to so I can go to bed!