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
Sunday, July 11, 2010
Last Thought for Sunday
Did anyone ever think they'd HAVE to get a swim cap? Not me. Not in a million years. But, we live a short jaunt away from the neighborhood community center and pool. And, goodness knows my kids are not going to let me not take them swimming this Summer! I don't think I'll be comfortable enough to go totally bald to the pool, but scarves & hats are maybe not the right thing to wear either. So, reluctantly, I've been looking at swim caps. Surprisingly, there are some that aren't hideous. Maybe not my first choice for pool head-gear, but not hideous. What do you think?
Today started out super rough for me. I began the day by popping my 2 anti-nausea meds (both of which cause headaches) and a pain pill and falling back to sleep for a little while. Peanut butter toast helped the pills stay down.
I finally got to eat some of the fish tacos Michelle brought us for dinner last night, (Um, YUM) as last night, when it was time to eat the fish tacos, my stomach wasn't up for it. I ate leftover mashed potatoes from GG's dinner the night before. I am SO glad I asked Michelle to bring the recipe because those fish tacos were amazing - and a new Fahndrich family favorite. I can't stop blubbering all over myself about how wonderful Michelle is - she drove from Salem to bring us dinner! An hour and a half drive (one way!) just to bring us dinner. And honestly, her day was already packed. Seriously, she's probably tired of me talking about it, but I just feel so blessed that she did that for us. I also want to give a HUGE thank you to Sharon who brought us dinner tonight. TOTALLY hit the spot. It was the perfect, well rounded dinner and I kind of think I'm having more for lunch tomorrow. So good! We are so blessed with friends and family who have stood by us not just through this latest go-'round, but over the last 3 years.
After lunch, Joel took the kids to play at Uncle Jeremy's house for a little while (and Uncle Jeremy sent them home with a NEW Xbox game - so exciting!!) and I was able to sit on the bed and fold the piles (and piles) of clean laundry sitting in my room and get them put away. What a feeling of accomplishment after two and a half days of feeling absolutely miserable and being out of commission. I didn't really start feeling like I could do anything until the 3rd day following chemo last month, so I feel like this is a bit of an improvement this month. Though, we'll see how I feel in the morning! I guess the good news is that if I feel sick in the morning again, the laundry will already be done and put away.
The kids had a difficult time settling down tonight. I don't blame them...I understand how hard this has all been for Joel and I to go through - and we 'get' it all (Well, as much as we can, right?). As little kids, all they know is that their world is in a bit of chaos and Mommy hasn't been herself the last couple days.
Uncle Ben asked me tonight how he could pray specifically...I hadn't thought about putting specific things to pray for on the blog until he asked that. Of course, I would love for God to heal me. But, in the meantime, there are totally specific things that you can all be praying for day by day as I go on this journey. I think that what I want or feel I need changes sometimes hourly - mostly depending on how I'm feeling!
Pray for side-effects to be minimal, and a quick recovery after each treatment.
Pray for a platelet count of 50,000 or greater, that holds.
Pray for grace and peace for Will, Hunter & Liv as they don't understand everything that's going on.
Pray for strength and grace for Joel as he picks up the slack around the house and with the children, in addition to doing his "normal" job.
Thank you for loving us and standing by us during this time!
Betsy & Joel
I finally got to eat some of the fish tacos Michelle brought us for dinner last night, (Um, YUM) as last night, when it was time to eat the fish tacos, my stomach wasn't up for it. I ate leftover mashed potatoes from GG's dinner the night before. I am SO glad I asked Michelle to bring the recipe because those fish tacos were amazing - and a new Fahndrich family favorite. I can't stop blubbering all over myself about how wonderful Michelle is - she drove from Salem to bring us dinner! An hour and a half drive (one way!) just to bring us dinner. And honestly, her day was already packed. Seriously, she's probably tired of me talking about it, but I just feel so blessed that she did that for us. I also want to give a HUGE thank you to Sharon who brought us dinner tonight. TOTALLY hit the spot. It was the perfect, well rounded dinner and I kind of think I'm having more for lunch tomorrow. So good! We are so blessed with friends and family who have stood by us not just through this latest go-'round, but over the last 3 years.
After lunch, Joel took the kids to play at Uncle Jeremy's house for a little while (and Uncle Jeremy sent them home with a NEW Xbox game - so exciting!!) and I was able to sit on the bed and fold the piles (and piles) of clean laundry sitting in my room and get them put away. What a feeling of accomplishment after two and a half days of feeling absolutely miserable and being out of commission. I didn't really start feeling like I could do anything until the 3rd day following chemo last month, so I feel like this is a bit of an improvement this month. Though, we'll see how I feel in the morning! I guess the good news is that if I feel sick in the morning again, the laundry will already be done and put away.
The kids had a difficult time settling down tonight. I don't blame them...I understand how hard this has all been for Joel and I to go through - and we 'get' it all (Well, as much as we can, right?). As little kids, all they know is that their world is in a bit of chaos and Mommy hasn't been herself the last couple days.
Uncle Ben asked me tonight how he could pray specifically...I hadn't thought about putting specific things to pray for on the blog until he asked that. Of course, I would love for God to heal me. But, in the meantime, there are totally specific things that you can all be praying for day by day as I go on this journey. I think that what I want or feel I need changes sometimes hourly - mostly depending on how I'm feeling!
Pray for side-effects to be minimal, and a quick recovery after each treatment.
Pray for a platelet count of 50,000 or greater, that holds.
Pray for grace and peace for Will, Hunter & Liv as they don't understand everything that's going on.
Pray for strength and grace for Joel as he picks up the slack around the house and with the children, in addition to doing his "normal" job.
Thank you for loving us and standing by us during this time!
Betsy & Joel
Saturday, July 10, 2010
The Day After
Today has been a rough day. I have been in bed nearly all day, nauseous while using 2 forms of RX anti-nauseas, (which both cause headaches), and exhausted, and achy. Chemotherapy really does suck the life out of me for a couple days following - and just when I'm starting to feel better, my hair starts coming out in handfuls. :) But, God knows the number of hairs on (or not on) my head, and knows the number of treatments I'll have to do to see if this works, or doesn't work.
Dr K had been convinced after seeing a 29,000 count go to a 33,000 count in just days, that after the 2nd chemotherapy treatment, if I got up to/above 50,000 and stayed for the next 3 weeks, that she could be convinced to stop treatment. She said all that, then we got the results of my blood test back with a knock at the door. 13,000. They'd dropped out by 20,000 in just a matter of days with no cause that we know of. So, now things are up in the air again. I get to go in once a week to see what my count is, and then it will be decided if I go in for round 3.
The kids were in and out of my room - with a promise to watch their show quietly or to keep the Xbox volume down low (and not to wiggle TOO much) but sweet Livi just has zero concept of quiet (and of not wiggling as that's literally all she does all day long!). She went for a long walk with Joel and the dog today, stopping to play at the slides and climb, and chase around other kids, and Joel thought he'd had her thoroughly worn out, but...no siree! She laid in bedsinging yelling "Row, row, row your boat" so long that each of the boys went down to complain about how loud she was being. After making her sad eyes and pitiful face, and saying "I snuggle you, Daddy" in her sweetest little princess voice, he took her downstairs to snuggle. That, my friends, was HOURS ago. Now, she's been in my room about 15 minutes after telling Daddy "I miss Mommy today, I need to snuggle her". He brought her up and she demanded the big pillow and told me it was her turn to pick a show. 13 minutes into an episode of "Wow, Wow Wubbzzy" and she'll be heading to bed soon, but not before getting in her snuggle time with mama. Being away from my kids or having my tolerance of noise and wiggles severely lowered has probably been the hardest part of all of this.
I know that my love language is touch, and it's become very clear that at least two of my 3 kids have the same love language. I've spent the entire time up until now "rubbering" her arms, legs, feet, back, tummy and head...and now her little finger is rubbing softly on my arm. Her bedtime routine is to get snuggled up with ber "LullaBible" CD turned on, then she'll roll on her tummy and say "rubber my back and pray" every night. She closes her eyes tightly while I pray and rub her back softly and usually (USUALLY!) she's good to snuggle in for the night.
Hunter's the same way - he adores snuggling and will sit as close to you as humanly possible even holding hands with intertwined fingers if he gets his way. When I don't feel good, he makes an extra effort to come and give me kisses so "You can feel better, Mommy!". My children are precious - and I love them so much.
Dr K had been convinced after seeing a 29,000 count go to a 33,000 count in just days, that after the 2nd chemotherapy treatment, if I got up to/above 50,000 and stayed for the next 3 weeks, that she could be convinced to stop treatment. She said all that, then we got the results of my blood test back with a knock at the door. 13,000. They'd dropped out by 20,000 in just a matter of days with no cause that we know of. So, now things are up in the air again. I get to go in once a week to see what my count is, and then it will be decided if I go in for round 3.
The kids were in and out of my room - with a promise to watch their show quietly or to keep the Xbox volume down low (and not to wiggle TOO much) but sweet Livi just has zero concept of quiet (and of not wiggling as that's literally all she does all day long!). She went for a long walk with Joel and the dog today, stopping to play at the slides and climb, and chase around other kids, and Joel thought he'd had her thoroughly worn out, but...no siree! She laid in bed
I know that my love language is touch, and it's become very clear that at least two of my 3 kids have the same love language. I've spent the entire time up until now "rubbering" her arms, legs, feet, back, tummy and head...and now her little finger is rubbing softly on my arm. Her bedtime routine is to get snuggled up with ber "LullaBible" CD turned on, then she'll roll on her tummy and say "rubber my back and pray" every night. She closes her eyes tightly while I pray and rub her back softly and usually (USUALLY!) she's good to snuggle in for the night.
Hunter's the same way - he adores snuggling and will sit as close to you as humanly possible even holding hands with intertwined fingers if he gets his way. When I don't feel good, he makes an extra effort to come and give me kisses so "You can feel better, Mommy!". My children are precious - and I love them so much.
Welcome Back - to you AND to me!
It's been over a year since my last post and very simply, the reason I stopped was because my blood disorder stopped causing me problems - yet, I was encompassed in pain and didn't have the energy to update on every little thing I did for the pain. It was mind-numbingly dull and wasn't really helping anyway, so I didn't see the need.
A few weeks ago, though (months, now, I guess) my platelet disorder started becoming a problem again with a count down to 5,000 at one point. I was put on dexamethasone which just freaked me out (side-effects - sweating, shaking, mood swings (that were HARD to control), depressed thoughts, anxiety attacks over nothing...a little of this, a little of that, which added up to a LOT of problems.) To top it off, the steroids usually gave me a 3-4 week window of time before I had to retreat, and this go-around, my count dropped from 78,000 after 4 days taking it, to 7,000 5 days later. Not an ideal response.
My hematologist suggested we try Cytoxan, a form of chemotherapy, to see how it worked. It works in some cases of RA and Lupus, basically other auto-immune disorders, but with ITP it's tricky because essentially we're seeing a drop in ALL my numbers, including platelets. It's a balance to see if it kills off the atibodies that I'm creating MORE than the platelets, so the platelets can continue to live. I LOVE how so much of medicine is an educated guessing game! I will very seriously say that I do have one of the best minds in the field working with me - and even as an educated guessing game, she is one of the BEST at making appropriate guesses. She's as sharp as a tack - and I wish everyone could meet her. YOU would LOVE her as Joel and I do. (She's the one that held hands and prayed with Joel and I at our last appointment. Not prayed with us - prayed FOR me. Amazing).
I am super tired and don't feel like playing "catch-up" at the moment from the last month - I have given most everyone who needs it the information they need to date, so here is what happened today at my 2nd appointment for Chemotherapy.
I went back and the nurse started my IV. *Little tidbit of happy information* I don't do well with IVs. I have a list of requirements for anyone starting one on me from "Don't dig, if you can't find it, just repoke somewhere else" to please use lido if you are good at your job and can use it without losing the vein. Please, PLEASE, try your darndest to get it in the first shot. I don't look, I hold someone's hand and the minute she starts pushing the iv needle in, I start blacking out and the room starts spinning. Laying down, sitting down, no matter what, I start to go. Well, today, the doctor wanted to see me AFTER the iv was started. I was leaning into the wall and needed assistance getting to a chair - it was a mess. We decided I'd see her BEFORE the IV was started in the future so I wouldn't have to get up. And this was before any premeds that made me loopy even! That's just how incredibly bad I am with IV's. (Blood draws aren't as bad, but one arm (with bigger, better veins) has tons of scar tissue built up and I've made the lab peeps use butterfly (baby) needles and go higher or lower on that vein to avoid the scars. If they don't - it hurts, BADLY for an hour following. That's NOT normal.)
My platelet count was only 13,000 today. I was really devastated by that number since it had gone from 29,000 to 33,000 and I was really hoping (and still am, I guess) that this second treatment would be it for the cytoxan. My Doctor even said that if she could get me up over 50,000, she'd be willing to stop. It's not all over and done with yet, but with the drop today, it doesn't look spectacular. So frustrating.
I am starting to feel the yucky chemo side-effects. My hair is already falling out after one treatment, so I went and cut it all off into a "cool" do that is easy enough to play with to cover the thin spots. My amazing sister-in-law did the leg-work and set an appointment for me at a wig-shop in downtown Portland.
Over the phone she'd been quoted $120 to $250 for synthetic hair, so we were thinking it was fairly reasonable. Yeah, RIGHT! The very first one I tried on was fantanstic. It wasn't too full, looking more like the natural thickness of my hair, the cut was adorable on my face shape, and the color was literally colors that Katie has done on me before. I tried on several others and learned how to tie the scarves all pretty, but after asking the price, and trying not to choke, I told her I needed to "talk to my husband about it". As she left to use the restroom, I pulled the tag around and my awesome sister Jenee took a picture of the tag with all the identification details on it so we could look it up online.
Not only did I find it online, I found it for $130 online, and $8 shipping. And no tax if I mail it to Joel's office in Oregon! PLUS, then I found a little blurb about a medical discount and they'll give me a medical discount on TOP of the already great price. I'm going to email and ask if they have any fliers, because with as wonderful as they've been to me at Acewigs.com, I asked Dr. Kolibaba if I could get the info to her for other men and women suffering hair loss. She was elated.
The rep from Ace Wigs emailed me back and this is what she had to say:
The bottom line is: They get it. And we (Dr K. and myself) love people who "get it".
I've rambled on for quite long enough - I'll attach some photos - of my hair right now, short and of the wig I'll be ordering soon. The one I tried on is the actual color, but I had the bangs pushed aside as they were SUPER long and in need of a trim. I've also started stocking up on scarves and hats that cover my entire head (that don't look "wintery" - few and far between!) so if you see any cute ones, let me know so I can go pick them up!
Thanks so much - and thank you to EVERYONE for your continued prayers, love and support. Without you, we would probably not be doing as well as we are. Joel and I feel your love and the kids know they're loved by so many more people than most kids get to love them - and that means the world to me.
Betsy
PS: In the final picture, I had been bawling my eyes out - the reality of losing my hair and all that was happening was incredibly overwhelming. I know I don't look happy, but I do love the wig.
A few weeks ago, though (months, now, I guess) my platelet disorder started becoming a problem again with a count down to 5,000 at one point. I was put on dexamethasone which just freaked me out (side-effects - sweating, shaking, mood swings (that were HARD to control), depressed thoughts, anxiety attacks over nothing...a little of this, a little of that, which added up to a LOT of problems.) To top it off, the steroids usually gave me a 3-4 week window of time before I had to retreat, and this go-around, my count dropped from 78,000 after 4 days taking it, to 7,000 5 days later. Not an ideal response.
My hematologist suggested we try Cytoxan, a form of chemotherapy, to see how it worked. It works in some cases of RA and Lupus, basically other auto-immune disorders, but with ITP it's tricky because essentially we're seeing a drop in ALL my numbers, including platelets. It's a balance to see if it kills off the atibodies that I'm creating MORE than the platelets, so the platelets can continue to live. I LOVE how so much of medicine is an educated guessing game! I will very seriously say that I do have one of the best minds in the field working with me - and even as an educated guessing game, she is one of the BEST at making appropriate guesses. She's as sharp as a tack - and I wish everyone could meet her. YOU would LOVE her as Joel and I do. (She's the one that held hands and prayed with Joel and I at our last appointment. Not prayed with us - prayed FOR me. Amazing).
I am super tired and don't feel like playing "catch-up" at the moment from the last month - I have given most everyone who needs it the information they need to date, so here is what happened today at my 2nd appointment for Chemotherapy.
I went back and the nurse started my IV. *Little tidbit of happy information* I don't do well with IVs. I have a list of requirements for anyone starting one on me from "Don't dig, if you can't find it, just repoke somewhere else" to please use lido if you are good at your job and can use it without losing the vein. Please, PLEASE, try your darndest to get it in the first shot. I don't look, I hold someone's hand and the minute she starts pushing the iv needle in, I start blacking out and the room starts spinning. Laying down, sitting down, no matter what, I start to go. Well, today, the doctor wanted to see me AFTER the iv was started. I was leaning into the wall and needed assistance getting to a chair - it was a mess. We decided I'd see her BEFORE the IV was started in the future so I wouldn't have to get up. And this was before any premeds that made me loopy even! That's just how incredibly bad I am with IV's. (Blood draws aren't as bad, but one arm (with bigger, better veins) has tons of scar tissue built up and I've made the lab peeps use butterfly (baby) needles and go higher or lower on that vein to avoid the scars. If they don't - it hurts, BADLY for an hour following. That's NOT normal.)
My platelet count was only 13,000 today. I was really devastated by that number since it had gone from 29,000 to 33,000 and I was really hoping (and still am, I guess) that this second treatment would be it for the cytoxan. My Doctor even said that if she could get me up over 50,000, she'd be willing to stop. It's not all over and done with yet, but with the drop today, it doesn't look spectacular. So frustrating.
I am starting to feel the yucky chemo side-effects. My hair is already falling out after one treatment, so I went and cut it all off into a "cool" do that is easy enough to play with to cover the thin spots. My amazing sister-in-law did the leg-work and set an appointment for me at a wig-shop in downtown Portland.
Over the phone she'd been quoted $120 to $250 for synthetic hair, so we were thinking it was fairly reasonable. Yeah, RIGHT! The very first one I tried on was fantanstic. It wasn't too full, looking more like the natural thickness of my hair, the cut was adorable on my face shape, and the color was literally colors that Katie has done on me before. I tried on several others and learned how to tie the scarves all pretty, but after asking the price, and trying not to choke, I told her I needed to "talk to my husband about it". As she left to use the restroom, I pulled the tag around and my awesome sister Jenee took a picture of the tag with all the identification details on it so we could look it up online.
Not only did I find it online, I found it for $130 online, and $8 shipping. And no tax if I mail it to Joel's office in Oregon! PLUS, then I found a little blurb about a medical discount and they'll give me a medical discount on TOP of the already great price. I'm going to email and ask if they have any fliers, because with as wonderful as they've been to me at Acewigs.com, I asked Dr. Kolibaba if I could get the info to her for other men and women suffering hair loss. She was elated.
The rep from Ace Wigs emailed me back and this is what she had to say:
"In recent years, almost all of our suppliers have forced us to display prices higher than those we would like to offer our clients. However, while you’re on the phone speaking with Kim, he can temporarily lower the price of any wig on our site, process your order while you wait, and then raise the price back up!" And, "Our prayers for your complete recovery following your treatments. I went through chemo in 2004 and lost every hair on my head, so I’m particularly happy to be able to offer a discount to other women who are undergoing hair loss and are in need of a nice wig at an affordable price."
The bottom line is: They get it. And we (Dr K. and myself) love people who "get it".
I've rambled on for quite long enough - I'll attach some photos - of my hair right now, short and of the wig I'll be ordering soon. The one I tried on is the actual color, but I had the bangs pushed aside as they were SUPER long and in need of a trim. I've also started stocking up on scarves and hats that cover my entire head (that don't look "wintery" - few and far between!) so if you see any cute ones, let me know so I can go pick them up!
Thanks so much - and thank you to EVERYONE for your continued prayers, love and support. Without you, we would probably not be doing as well as we are. Joel and I feel your love and the kids know they're loved by so many more people than most kids get to love them - and that means the world to me.
Betsy
PS: In the final picture, I had been bawling my eyes out - the reality of losing my hair and all that was happening was incredibly overwhelming. I know I don't look happy, but I do love the wig.
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