I wonder where I might find some pretty purple scarves and shirts to match the bags under my eyes? I don't know if it's because I'm "sick", but I know one thing for sure: I'm not sleeping at night. I've had trouble getting to sleep at night and I'm not really sure why. Last night I was awake until at least 3 (the last time I looked at the clock) and one night I was literally awake all night long - until 5:30. Joel's alarm went off at 6 and I got up to talk to him for a bit, then back to sleep until the kids woke around 8. That was NOT a great day following, let me tell you. I don't know why sleep eludes me. Maybe it's the Plaquenil, though, nothing in the medicine info says it causes insomnia (upset stomach? Yes. Oh, boy, yes). Maybe it's the combination of everything going on in my body and I just can't get it settled down.
Needless to say, I'm pretty tired right now. It's my "tired" time of day when I really feel the most exhausted and run down - I need to figure out a new dinner routine. Either Dream Dinners or every single meal in the crock-pot or something. I'm just too tired to stand in the kitchen & cook at night - and supposedly, the exhaustion gets worse. Joy. :)
I know this isn't the most chipper, upbeat post. I'm extremely tired today. Though, overall it was a good day. I got two of the kids rooms cleaned & vaccumed, my bathroom is started being cleaned (rugs up, counter cleaned off, so tomorrow I can actually clean it and be done) and all the clean laundry folded and put away. I love that feeling, plus it helps me sleep at night without the "mess" of clean clothes needing to be folded sitting on the floor in my room. It was a productive day, I'm just tired.
Thursday, July 22, 2010
Monday, July 19, 2010
7/19/10 Lab Results and Hair Issues
Platelet count today was a whopping 15,000. I was told by the nurse that Dr. K was out today but if the on-call Dr wanted me to do anything differently than what I was, she'd call my cell. I never heard back, so I'm guessing I just take the Plaquenil until I hear from my own Dr. tomorrow. If I don't hear, I'll call them tomorrow afternoon and see if I am supposed to change anything, or when to come in for another blood test.
In other news - yesterday I did my hair and asked Joel to check for any "holes". I asked if I should just wear a hat or scarf, and he hemmed and hawwed for a few seconds and I finally said "If I need to do it, just let me know!" He suggested I might feel more comfortable wearing a scarf or a hat.
I officially "need" to wear something on my head when I leave the house. I'm not going to say I didn't have a difficult time with it. I cried. I felt awkward walking in to the party for the first time with short hair and a straw cowboy-style sun hat. They're totally in style, and, it's a cute one. I got a ton of compliments on how cute I looked. I still felt awkward. It's probably just because I knew what was underneath.
Have I mentioned that I have the most amazing husband? I do. He never fails to give me a shoulder to cry on, arms to wrap around me and hold me tightly, prayers at any time, day or night, and an ear to listen. No matter how many times I have said "I hate this!" or "I can't do this anymore" he always listens without judgement and reminds me I can, and that we'll do it - together. I have cried at the thought that before the beginning of time, God knew this was the man I was to walk this journey with, and made Joel with an amazing patience and grace for carrying "the weight of the world" on his shoulders without looking like he's weighed down at all. In fact, he says he's happy to do it. And that knowing what he knows now, he'd marry me again, a hundred times over. It's funny how, when you get married, you think you can't love a person more than you at that very moment. But, as time goes by, the longer I am with Joel, the more I simply cannot fathom life without him. He is a good man.
I could write about Joel all day. :) But, back to hair loss, since that's the topic of the hour. The woman I met with at the wig-shop said to shave my hair no shorter than a "3" guard when the time came. There's no reason to bic it all the way off, according to her. I am not choosing to lose my hair. In fact, though I "chose" to cut it off, and soon will "choose" to shave it, it's not really my choice. I am sad. I like having longer hair. I like being able to curl it and straighten it and make it pretty for 'date nights'. I am very sad that I'm losing it, especially knowing it will take so long to really grow back in again after the chemo stops (4 more months) and even then, knowing it might never be the same again. My friend Abby cut her hair short by choice. She had literally, the most amazing long, healthy, thick dark brown hair I have ever seen in my life. Could I just have taken HER hair, I would have in a heart beat. Abby is beautiful inside and out, and she looks absolutely amazing with long or short hair, or, even a shaved head. How do I know? Because she did shave her head! I think it started as a color issue the first time, if I remember right, and she decided to just shave it. It had already been short on the sides and longer in the middle, so she did it in stages, but it ended up shaved. ALL OFF. Abby did hers as a choice. Abs is confident, and amazing and has overcome so much in the last few years. She looks beautiful with or without hair - and her confidence shines. I don't feel so confident. I don't feel too shiny or brave or awesome. So, I've asked Abby to come and help me shave my head when the time comes. I'm sure I could do it by myself. But I feel like I want a little bit of her strength and confidence to transfer to me when the deed is done. And, thankfully, she has agreed.
Today I nearly left the house without my hat - I totally didn't think about it, simply because it hasn't been necessary until now. I can see this whole thing will be taking some getting used to. Also, I can see it's about time to place the order for the wig.
Right now I'm watching Beverly Hills Chihuahua with the kids, so I'll close. Tomorrow is another day.
In other news - yesterday I did my hair and asked Joel to check for any "holes". I asked if I should just wear a hat or scarf, and he hemmed and hawwed for a few seconds and I finally said "If I need to do it, just let me know!" He suggested I might feel more comfortable wearing a scarf or a hat.
I officially "need" to wear something on my head when I leave the house. I'm not going to say I didn't have a difficult time with it. I cried. I felt awkward walking in to the party for the first time with short hair and a straw cowboy-style sun hat. They're totally in style, and, it's a cute one. I got a ton of compliments on how cute I looked. I still felt awkward. It's probably just because I knew what was underneath.
Have I mentioned that I have the most amazing husband? I do. He never fails to give me a shoulder to cry on, arms to wrap around me and hold me tightly, prayers at any time, day or night, and an ear to listen. No matter how many times I have said "I hate this!" or "I can't do this anymore" he always listens without judgement and reminds me I can, and that we'll do it - together. I have cried at the thought that before the beginning of time, God knew this was the man I was to walk this journey with, and made Joel with an amazing patience and grace for carrying "the weight of the world" on his shoulders without looking like he's weighed down at all. In fact, he says he's happy to do it. And that knowing what he knows now, he'd marry me again, a hundred times over. It's funny how, when you get married, you think you can't love a person more than you at that very moment. But, as time goes by, the longer I am with Joel, the more I simply cannot fathom life without him. He is a good man.
I could write about Joel all day. :) But, back to hair loss, since that's the topic of the hour. The woman I met with at the wig-shop said to shave my hair no shorter than a "3" guard when the time came. There's no reason to bic it all the way off, according to her. I am not choosing to lose my hair. In fact, though I "chose" to cut it off, and soon will "choose" to shave it, it's not really my choice. I am sad. I like having longer hair. I like being able to curl it and straighten it and make it pretty for 'date nights'. I am very sad that I'm losing it, especially knowing it will take so long to really grow back in again after the chemo stops (4 more months) and even then, knowing it might never be the same again. My friend Abby cut her hair short by choice. She had literally, the most amazing long, healthy, thick dark brown hair I have ever seen in my life. Could I just have taken HER hair, I would have in a heart beat. Abby is beautiful inside and out, and she looks absolutely amazing with long or short hair, or, even a shaved head. How do I know? Because she did shave her head! I think it started as a color issue the first time, if I remember right, and she decided to just shave it. It had already been short on the sides and longer in the middle, so she did it in stages, but it ended up shaved. ALL OFF. Abby did hers as a choice. Abs is confident, and amazing and has overcome so much in the last few years. She looks beautiful with or without hair - and her confidence shines. I don't feel so confident. I don't feel too shiny or brave or awesome. So, I've asked Abby to come and help me shave my head when the time comes. I'm sure I could do it by myself. But I feel like I want a little bit of her strength and confidence to transfer to me when the deed is done. And, thankfully, she has agreed.
Today I nearly left the house without my hat - I totally didn't think about it, simply because it hasn't been necessary until now. I can see this whole thing will be taking some getting used to. Also, I can see it's about time to place the order for the wig.
Right now I'm watching Beverly Hills Chihuahua with the kids, so I'll close. Tomorrow is another day.
Party on Down!
Yesterday we went to celebrate the Birthdays of our good friends' little boys. Jarek turned 5 and Jakoby is the big 0-1. Both are adorable and super sweet and it's clear that Erik & Sharon are amazing parents. I think Sharon stresses about her job as SAHM sometimes, so I think it's important to tell the world what an amazing job she's doing. It's very evident the time and energy she's poured into those boys, and she's a great mother, and one I often try to copy (especially in the mopping arena!). And I'm not just saying all this because she's my friend. I like friends that are "iron sharpening iron" friends, and I for sure think Shaon is one who makes me want to be better and everything I do. I love her.
There are a few things you can always count on for Jarek's Birthday Party since the M's moved here: Great weather, a big backyard BBQ, and plenty of water games for all the kids to play in (wading pool, slip n' slide, sprinkler, water balloons, squirt guns...). In fact, we don't even put our kids in "actual" clothes - we just put them in swim trunks and matching shirts (Liv of course wore her ADORABLE new eyelet swimsuit cover up and her straw hat with low pony tails...it was ridiculously cute!!) so they can just peel off the top layer and GO!
I love getting to see my friends, the kids getting energy out and being exhausted at bedtime and the kids love pretty much everything about Erik & Sharon's. What's not to love?! Here are a couple shots from the day:
There are a few things you can always count on for Jarek's Birthday Party since the M's moved here: Great weather, a big backyard BBQ, and plenty of water games for all the kids to play in (wading pool, slip n' slide, sprinkler, water balloons, squirt guns...). In fact, we don't even put our kids in "actual" clothes - we just put them in swim trunks and matching shirts (Liv of course wore her ADORABLE new eyelet swimsuit cover up and her straw hat with low pony tails...it was ridiculously cute!!) so they can just peel off the top layer and GO!
I love getting to see my friends, the kids getting energy out and being exhausted at bedtime and the kids love pretty much everything about Erik & Sharon's. What's not to love?! Here are a couple shots from the day:
Joel taking his turn during the adult's game.
William skipping!
Soak the sponge in the pool, run down the yard...
Fill the bucket!
Liv cut in line and took a turn (she wasn't even playing!)
Love the progression of these pics- Erik showing her how to squeeze it...
Erik may or may not be helping her get her sponge rung all the way out. :)
Go, Will, GO!!! (as Noah checks out the competition!)
Birthday Boy Jarek. I love this kid!! He said he liked my new haircut. ;)
Birthday boy Jakoby James - my favorite baby of all times. (Except maybe Sanders)
(Signature M. drool on his shirt. LOVE IT!)
Saturday, July 17, 2010
Let's see how much I can remember
Well, it's an actual think called "Chemo Brain". You forget EVERYTHING. Words you use every day, why you walked into a room, what you were talking about, that your friends are coming over to bring presents. Sigh. Let's see how much of the last few days I can remember, shall we?
Thursday (6 days post chemotherapy treatment 2) I went in for a blood test to see where I was at. I noticed some petechaei on my legs and ankles so I wasn't too encouraged, and rightfully so. I had dropped from 13,000 on Friday the 9th of July to 7,000 on Thursday the 15th. Seven thousand. That's just so low. At my last meeting with Dr. K., I told her (with Joel's support) that I would be unwilling to take any more dexamethasone steroids. The side-effects are simply too far reaching and for much too long for me to take even a "small dose", especially when the last dose I took got me up and then I plummetted in 5 whole days to 5,000 platelets. It's not worth my sanity and my family's sanity.
Dr. K then wrote me a prescription for Plaquenil, which has it's own side-effects, but they're not that much off from chemo, so whatever. The Plaquenil is to be used for a "quick fix" like this weekened while we "wait" for the chemo to start doing it's job. I'm not going to lie - Thursday was a hard day for me. I had to work pretty hard to cover the back of my head so that there were no bare spots. And then, the wind was blowing it all over the place when I was outside. I was incredible disappointed and discouraged on Thursday to hear that the Cytoxan wasn't working (so far - most treatments are 6 months long. But the doctor had said if I got to 50,000 and stayed above 50,000, that she could be convinced to stop treatment). and that I'd need to take another breakthru drug to keep me from bleeding out. Not only was I feeling like crap from the treatment, and losing my hair, but it simply was not working. Very frustrating.
I am starting to get SUPER tired, but that's Thursday in a nutshell. I was sad after the report, but today I remembered that God still cares, and knows what's going on, and the number of hairs on my head. We are blessed beyond measure, and this is just a season of life that seems to have thrown a curveball at us.
Thursday (6 days post chemotherapy treatment 2) I went in for a blood test to see where I was at. I noticed some petechaei on my legs and ankles so I wasn't too encouraged, and rightfully so. I had dropped from 13,000 on Friday the 9th of July to 7,000 on Thursday the 15th. Seven thousand. That's just so low. At my last meeting with Dr. K., I told her (with Joel's support) that I would be unwilling to take any more dexamethasone steroids. The side-effects are simply too far reaching and for much too long for me to take even a "small dose", especially when the last dose I took got me up and then I plummetted in 5 whole days to 5,000 platelets. It's not worth my sanity and my family's sanity.
Dr. K then wrote me a prescription for Plaquenil, which has it's own side-effects, but they're not that much off from chemo, so whatever. The Plaquenil is to be used for a "quick fix" like this weekened while we "wait" for the chemo to start doing it's job. I'm not going to lie - Thursday was a hard day for me. I had to work pretty hard to cover the back of my head so that there were no bare spots. And then, the wind was blowing it all over the place when I was outside. I was incredible disappointed and discouraged on Thursday to hear that the Cytoxan wasn't working (so far - most treatments are 6 months long. But the doctor had said if I got to 50,000 and stayed above 50,000, that she could be convinced to stop treatment). and that I'd need to take another breakthru drug to keep me from bleeding out. Not only was I feeling like crap from the treatment, and losing my hair, but it simply was not working. Very frustrating.
I am starting to get SUPER tired, but that's Thursday in a nutshell. I was sad after the report, but today I remembered that God still cares, and knows what's going on, and the number of hairs on my head. We are blessed beyond measure, and this is just a season of life that seems to have thrown a curveball at us.
Wednesday, July 14, 2010
On Losing my Locks
It seems the dog and I are both shedding our winter coat. I wonder how much longer I have to wear my own hair before it's too thin to do anything with?
I'm so appreciative of all the people who have told me how encouraged they are or how proud they are of my attitude. In everything, I SO want God to be glorified - I mean how amazing would it be to walk through this and let people see Christ in me, rather than a debilitating treatment for a disorder wreaking havoc on my body? That's my prayer.
I sure have my days though. Some days are just hard. Long, exhausting days - and exhausted just from being awake. Not from actually DOING anything. Well, I guess those aren't "real" days for me since I have three children. Even just laying on the couch doing "nothing" requires several ups and downs each day.
And not that I want anyone to be without work, but Joel and I realized last week that every time there's be a major issue with my health (like crisis mode, requiring extra help when Joel's working), one of his parents has been out of work. Coincidence? I choose to think not. Yesterday I was feeling much worse than I thought I would. I was able to call Papa Dave to come sit with the kids so I could nap. I needed the sleep so desperately, but with Larry, Curly & Moe here, it would have been impossible. Especially Curly. She's a talker.
I'm so thankful today for the provision that God's given us...that where there are unanswered questions, there are also needs met before we can even present our requests to God. It's an amazing thing. He's an amazing God.
I'm so appreciative of all the people who have told me how encouraged they are or how proud they are of my attitude. In everything, I SO want God to be glorified - I mean how amazing would it be to walk through this and let people see Christ in me, rather than a debilitating treatment for a disorder wreaking havoc on my body? That's my prayer.
I sure have my days though. Some days are just hard. Long, exhausting days - and exhausted just from being awake. Not from actually DOING anything. Well, I guess those aren't "real" days for me since I have three children. Even just laying on the couch doing "nothing" requires several ups and downs each day.
And not that I want anyone to be without work, but Joel and I realized last week that every time there's be a major issue with my health (like crisis mode, requiring extra help when Joel's working), one of his parents has been out of work. Coincidence? I choose to think not. Yesterday I was feeling much worse than I thought I would. I was able to call Papa Dave to come sit with the kids so I could nap. I needed the sleep so desperately, but with Larry, Curly & Moe here, it would have been impossible. Especially Curly. She's a talker.
I'm so thankful today for the provision that God's given us...that where there are unanswered questions, there are also needs met before we can even present our requests to God. It's an amazing thing. He's an amazing God.
Tuesday, July 13, 2010
Tuesday, 7/13/10
Papa Dave came over responding to my distressed text message this morning pleading for help. Last month, by this day, I was feeling ok. At the VERY least, I could handle taking care of the WHO and deal with life a little bit. My resident chemo expert, Mona, so graciously reminded me that chemicals are building UP in my body - not going away. By her last treatment getting out of bed was all she could muster most days. Oh, YAY! Something to look forward to!
Dave came over so I could come upstairs and take a rest, nap, break, whatever, but as exhausted as I am, I'm finding it difficult to fall asleep. I tried a quiet, boring show, and if blogging doesn't knock me out, reading will probably be next. Sometimes, it's really impossible to make my mind shut down. I'm a planner, an organizer by nature - I like to know what's coming next so I'm not caught off guard. You can't really be like that when you're (really, really working on) wanting God to be the one in charge and be glorified in everything that happens.
I've been thinking alot the last day-ish about the Scripture "A merry heart does good like a medicine". I've asked God for and feel like there's been a change in my emotional and spiritual health over the last several weeks - and I feel like my heart does feel merry, joyful - and once again, I can say "The joy of the Lord is my strength" because I don't have any of my own strength left: physical, emotional or mental. I am so incredibly tired - and isn't it amazing that after three years of dealing with all of this, this next "stage" is simply just starting. The thought of treatments starting and stopping and on again off again with my ITP makes me exhausted. I can only put one foot in front of the other and walk on the path God has for me- one day, sometimes one moment at a time. It's funny, really, how when I focus my eyes on Christ, and not on the vast, looming future of "what-ifs" that the journey doesn't seem quite as overwhelming. It's when I start to plan and prepare for things that it begins to weigh on me.
This post feels really random - but maybe it's just enough of what I was thinking off my mind in order for my mind to rest now - and my body to follow suit.
Please keep praying for me - according to my sources, it gets worse before it gets better. And I'm so, so tired already.
--Bets
Dave came over so I could come upstairs and take a rest, nap, break, whatever, but as exhausted as I am, I'm finding it difficult to fall asleep. I tried a quiet, boring show, and if blogging doesn't knock me out, reading will probably be next. Sometimes, it's really impossible to make my mind shut down. I'm a planner, an organizer by nature - I like to know what's coming next so I'm not caught off guard. You can't really be like that when you're (really, really working on) wanting God to be the one in charge and be glorified in everything that happens.
I've been thinking alot the last day-ish about the Scripture "A merry heart does good like a medicine". I've asked God for and feel like there's been a change in my emotional and spiritual health over the last several weeks - and I feel like my heart does feel merry, joyful - and once again, I can say "The joy of the Lord is my strength" because I don't have any of my own strength left: physical, emotional or mental. I am so incredibly tired - and isn't it amazing that after three years of dealing with all of this, this next "stage" is simply just starting. The thought of treatments starting and stopping and on again off again with my ITP makes me exhausted. I can only put one foot in front of the other and walk on the path God has for me- one day, sometimes one moment at a time. It's funny, really, how when I focus my eyes on Christ, and not on the vast, looming future of "what-ifs" that the journey doesn't seem quite as overwhelming. It's when I start to plan and prepare for things that it begins to weigh on me.
This post feels really random - but maybe it's just enough of what I was thinking off my mind in order for my mind to rest now - and my body to follow suit.
Please keep praying for me - according to my sources, it gets worse before it gets better. And I'm so, so tired already.
--Bets
Subscribe to:
Posts (Atom)
.jpg)
