Saw my oncologist on 12/21. He's ordered another abdomen CT scan to check my spleen and an x-ray of my left ribs since they hurt off and on and especially to the touch. I go for those next Monday.
Went to a cardiologist in October for heart palpitations (PVC's). They ran a bunch of tests, including wearing a heart monitor for 7 days. I am on 50 mg. of a beta blocker. They are finally going away, I rarely feel them anymore.
Kaelyn has seen a new optometrist who says she is slightly farsighted and has astigmatism, but no need for glasses right now. We took her back to the dermatologist in Lubbock to check out a mole in her arm pit, he says its nothing to worry about right now. She now has "cookies" for her shoes-inserts to help build up her instep. She's still doing great in school and well in her therapy. She loved Christmas and her new toys/DVDs. She is going to be featured on the new website for the local Kindermusik, and her teacher is sending her pictures to a teacher on the east coast, so we'll see what comes out of that!
Monday, January 3, 2011
Thursday, September 16, 2010
And the verdict is in
So the doctor said all my test results were pretty good. My spleen in enlarged, so he will be watching that. Also, I have fatty deposits on my liver, which he says is from being overweight, so I needed to get serious about weight loss. He will see me again in December and probably repeat all the scans. But no lesions on my organs or bones!
So I've been getting up at 5:45am every morning to work out before work. Also eating really well. I've cut out diet drinks and sweet n low.
The doctor said I can pretty much go on living life like normal. I cannot however, donate blood anymore. Aaron says he will do it in my honor, but I know how much he hates needles!!! I will probably call the blood center and see if i can volunteer to do paperwork, make phone calls, something every once in awhile.
Trying to get back to life as normal, or as normal as is possible for us! Going to the NASW conference in Houston in October, and going to stay on as NASW branch chair in the panhandle. Got Kaelyn in Kindermusik which she loves. She is doing really well in PPCD this first week! I love her teacher.
I am getting "celebratory" highlights in my hair on Saturday. I quit doing highlights about a year ago, did an all over color. But now that I know I won't have chemo and lose my hair, I am going to get some fun highlights done! And I might just go and get a pedi too!!
So I've been getting up at 5:45am every morning to work out before work. Also eating really well. I've cut out diet drinks and sweet n low.
The doctor said I can pretty much go on living life like normal. I cannot however, donate blood anymore. Aaron says he will do it in my honor, but I know how much he hates needles!!! I will probably call the blood center and see if i can volunteer to do paperwork, make phone calls, something every once in awhile.
Trying to get back to life as normal, or as normal as is possible for us! Going to the NASW conference in Houston in October, and going to stay on as NASW branch chair in the panhandle. Got Kaelyn in Kindermusik which she loves. She is doing really well in PPCD this first week! I love her teacher.
I am getting "celebratory" highlights in my hair on Saturday. I quit doing highlights about a year ago, did an all over color. But now that I know I won't have chemo and lose my hair, I am going to get some fun highlights done! And I might just go and get a pedi too!!
Sunday, September 12, 2010
Happy birthday to my baby girl
Well, Kaelyn's birthday party was a hit! She LOVES her Elmo couch, has hardly moved from it today. I've even found Elmo scrapbooking supplies online so I can scrap the fun day!!! Today we got up and went to Donut Stop and donated to Special Olympics. She had donut holes for the first time and loved them! And...she colored on the wall for the first time. yay! hee hee.
I put pictures of Kaelyn's party on Facebook, and also posted pictures of the first time I held her, and one from every birthday. It's become my tradition to take one of her in the rocking chair in her room, and I can't believe how much she has grown!!
I wish Tuesday would hurry up and get here.
I put pictures of Kaelyn's party on Facebook, and also posted pictures of the first time I held her, and one from every birthday. It's become my tradition to take one of her in the rocking chair in her room, and I can't believe how much she has grown!!
I wish Tuesday would hurry up and get here.
Saturday, September 11, 2010
Today is Kaelyn's 3rd birthday party!!! I'm excited. I can't believe she will be 3 tomorrow. And on Monday I enroll her in school!!! Yikes, where has the time gone?? Thursday night she got horribly sick and we called the on call pediatrician, who said to go ahead and take her in to the ER, so we did. Lots of vomitting, but no fever or anything, so who knows. She was better yesterday, didn't eat much, but today she's back to her usual self! She weighs 31.8 lbs and is 34.5 inches tall!! She is having an Elmo birthday party.
Can't wait for my doctor appointment on Tuesday at 2:45. I'm so ready to find out all my test results and move on to the next thing!
My sister has been texting me mean stuff again. I think I'm going to have to get an attorney to settle mom's estate since there wasn't a will. I really don't want anything, there isn't much to have, but I'm not happy with my brother and sister taking it upon themselves to divvy everything up between the two of them. Tessa told me Rikki wanted mom's car, so I asked her how much he was going to pay she and I for it, and she said it was put in his name before mom died. I don't know if I believe that, but I'm sure an attorney can find out! They will find out to not mess with me!
Can't wait for my doctor appointment on Tuesday at 2:45. I'm so ready to find out all my test results and move on to the next thing!
My sister has been texting me mean stuff again. I think I'm going to have to get an attorney to settle mom's estate since there wasn't a will. I really don't want anything, there isn't much to have, but I'm not happy with my brother and sister taking it upon themselves to divvy everything up between the two of them. Tessa told me Rikki wanted mom's car, so I asked her how much he was going to pay she and I for it, and she said it was put in his name before mom died. I don't know if I believe that, but I'm sure an attorney can find out! They will find out to not mess with me!
Wednesday, September 8, 2010
The last couple of weeks...
have actually gone fairly quickly. We went up to Liberal for mom's memorial service on the 27th (service was on the 28th). Got to see my aunt and uncle from Iowa and it had been a few years since I've seen them. My brother had nothing to do with me (his fiancee is pregnant) and my sister barely talked to me or our aunt and uncle. My brother would hardly sit by me for some family pictures. he and I were once close. He wouldn't have anything to do with Kaelyn either. Kaelyn did have a fun time running around with her cousins. She was so cute! The guy who molested my niece showed up so we had to have him kicked out. I was actually surprised at how few people showed up. Made me very sad for my mom.
Last week I started all my tests...brain MRI, CT scans, and a skeletal survey. Yesterday I had my bone marrow biopsy. It went really well and I didn't feel a thing. I remember most of it (heard the doctor ask for the mallet!!!). I'm a little sore today but at home and taking it easy. I was given strict instructions to not do ANY housework (my husband loves me!). So I've been watching tv, playing on the computer, reading...and slept in until 9:30. woo hoo!
I see Dr. Patel on the 14th for all the results. I keep trying to think positive and that the LCH is localized to my skin. However, I know how things work out for me...2007 I was convinced Kaelyn would NOT have DS, she did; 2008 I was convinced I did NOT have thyroid cancer, I did; 2009 I was pretty sure my mom did NOT have a terminal illness and would fight it and live for quite some time, she did not; so I'm not real convinced this is going to be an easy ride!
Last week I started all my tests...brain MRI, CT scans, and a skeletal survey. Yesterday I had my bone marrow biopsy. It went really well and I didn't feel a thing. I remember most of it (heard the doctor ask for the mallet!!!). I'm a little sore today but at home and taking it easy. I was given strict instructions to not do ANY housework (my husband loves me!). So I've been watching tv, playing on the computer, reading...and slept in until 9:30. woo hoo!
I see Dr. Patel on the 14th for all the results. I keep trying to think positive and that the LCH is localized to my skin. However, I know how things work out for me...2007 I was convinced Kaelyn would NOT have DS, she did; 2008 I was convinced I did NOT have thyroid cancer, I did; 2009 I was pretty sure my mom did NOT have a terminal illness and would fight it and live for quite some time, she did not; so I'm not real convinced this is going to be an easy ride!
Tuesday, August 24, 2010
Mom is at peace
My mom passed away this morning shortly before 11am. Her funeral will be Saturday at 2pm. My aunt and uncle from Iowa will be driving down for the funeral, they will get to meet Kaelyn for the first time!!
Monday, August 23, 2010
I don't even know where to begin...
Do I start with my mom receiving hospice and all the issues around that? or that I've been diagnosed with a very rare disease??? Or that my baby girl is almost 3 and will be starting PPCD?? Or brag about my wonderful husband who tolerates all this drama day in and day out and takes such good care of me and won't let me get down about all of this????
I was diagnosed with langerhans cell histiocytosis last week following what I thought would be a routine biopsy to remove a skin tag. Said skin tag was under my boob, where my bra sat, so it rubbed it and it fell off, but it grew right back and was rubbing again, causing it to hurt and bleed. That was July 20. The first week of August Aaron was in to see our doc, and he told Aaron that they had had to send the biopsy off for further testing, to California, but it is probably nothing and should have the results by the end of that week. Well, I finally hear from my doc on Aug. 17. LCH. All he said was it's not common, it will come back, it can affect the bones and lungs, and I needed to see a specialist. I see a hematologist/oncologist this Wednesday. From what we've read, I'm sure there will be a barrage of tests to determine where, if anywhere else, this is in my body, and then determine a course of treatment (low dose of radiation, chemo, steroids, or a combo of these). The spot my doc removed-well, he didn't get all of it, said that himself when he removed the stitches, so I'm sure one of the first orders of business will be to remove the rest of that. I also have a spot on my groin that worries me-it's never bothered me, but nothing rubs on it. But it is MUCH bigger and just looks weird, much like Bertha did (yes, I named her Bertha the boob tag. The other one is Gary the Groin Growth). The doc sent me a copy of my pathology report. At the end of it, the doc from UCLA says "thank you for the interesting and unusual case". Yep, that's me.
As for my mom-her MDS progressed into AML (lukemia) earlier this year. Chemo was helping, but now they have stopped treatments. They said another round of chemo would kill her. So she has elected to receive hospice care in her own home, up in Kansas. Of course, she hasn't talked to me since she left our house back in November, not a word, nothing. We come home from work and she's gone. She was mad because of us expecting my brother to pay us back the $3,000 he owed us. He had decided to move out a couple weeks prior, and I'm sure that was our fault too. No one messes with her precious baby boy!
Anyway, so my sister Tessa has been living with her (lost her job in May, I'm sure due to another failed drug test) and taking care of her. Which is good, because I had my turn last year! I was torn on what to do about going to see mom. Then this weekend, Tessa starts in with saying very hurtful things to me. Says I'm only coming to the funeral so I can be sure to "get my share" of mom's money/stuff. ha! Mom has NOTHING. Owes tons. The government will take all they can because 1. she doesn't have a will and 2. she's been on medicare/medicaid and they WILL recoup all they can when a person dies! So my brother and sister have a rude awakening coming. They've already decided who is getting what (between the two of them, I'm not included). So I plan to just sit back and let the cards fall where they will.
anyway, she started in with saying mean things to me. Asks if I think mom is hanging on because she's waiting to see me. I ask her if that's what she thinks and she says yes. Then she says she asked mom if she wanted to see me and mom said "if she wants to". (Tessa had told me mom was unresponsive, but since then mom's cousin has called and talked to her, mom prayed with the preacher and was "saved" and then she answered this question, so she doesn't sound too unresponsive to me). So, that REALLY made me mad. She can't even answer yes or no??? Saying no would have been less hurtful!! And like my friend Katie said, Jesus still has a lot of work cut out for him with my mom, if she's saved and still acting like Joyce!!!
So that's where I stand with mom. No texts from Tessa today. I think there is a lot going on there-she wants help but won't come out and ask, she wants to just get on with her life (she had planned on starting college this semester), and she wants me, the responsible child, to just come and deal with it. But I have made a promise to myself and Aaron, that I come first and my health definitely comes first!!! So that is what I am focusing on. I am just trying to take it one day at a time.
I was diagnosed with langerhans cell histiocytosis last week following what I thought would be a routine biopsy to remove a skin tag. Said skin tag was under my boob, where my bra sat, so it rubbed it and it fell off, but it grew right back and was rubbing again, causing it to hurt and bleed. That was July 20. The first week of August Aaron was in to see our doc, and he told Aaron that they had had to send the biopsy off for further testing, to California, but it is probably nothing and should have the results by the end of that week. Well, I finally hear from my doc on Aug. 17. LCH. All he said was it's not common, it will come back, it can affect the bones and lungs, and I needed to see a specialist. I see a hematologist/oncologist this Wednesday. From what we've read, I'm sure there will be a barrage of tests to determine where, if anywhere else, this is in my body, and then determine a course of treatment (low dose of radiation, chemo, steroids, or a combo of these). The spot my doc removed-well, he didn't get all of it, said that himself when he removed the stitches, so I'm sure one of the first orders of business will be to remove the rest of that. I also have a spot on my groin that worries me-it's never bothered me, but nothing rubs on it. But it is MUCH bigger and just looks weird, much like Bertha did (yes, I named her Bertha the boob tag. The other one is Gary the Groin Growth). The doc sent me a copy of my pathology report. At the end of it, the doc from UCLA says "thank you for the interesting and unusual case". Yep, that's me.
As for my mom-her MDS progressed into AML (lukemia) earlier this year. Chemo was helping, but now they have stopped treatments. They said another round of chemo would kill her. So she has elected to receive hospice care in her own home, up in Kansas. Of course, she hasn't talked to me since she left our house back in November, not a word, nothing. We come home from work and she's gone. She was mad because of us expecting my brother to pay us back the $3,000 he owed us. He had decided to move out a couple weeks prior, and I'm sure that was our fault too. No one messes with her precious baby boy!
Anyway, so my sister Tessa has been living with her (lost her job in May, I'm sure due to another failed drug test) and taking care of her. Which is good, because I had my turn last year! I was torn on what to do about going to see mom. Then this weekend, Tessa starts in with saying very hurtful things to me. Says I'm only coming to the funeral so I can be sure to "get my share" of mom's money/stuff. ha! Mom has NOTHING. Owes tons. The government will take all they can because 1. she doesn't have a will and 2. she's been on medicare/medicaid and they WILL recoup all they can when a person dies! So my brother and sister have a rude awakening coming. They've already decided who is getting what (between the two of them, I'm not included). So I plan to just sit back and let the cards fall where they will.
anyway, she started in with saying mean things to me. Asks if I think mom is hanging on because she's waiting to see me. I ask her if that's what she thinks and she says yes. Then she says she asked mom if she wanted to see me and mom said "if she wants to". (Tessa had told me mom was unresponsive, but since then mom's cousin has called and talked to her, mom prayed with the preacher and was "saved" and then she answered this question, so she doesn't sound too unresponsive to me). So, that REALLY made me mad. She can't even answer yes or no??? Saying no would have been less hurtful!! And like my friend Katie said, Jesus still has a lot of work cut out for him with my mom, if she's saved and still acting like Joyce!!!
So that's where I stand with mom. No texts from Tessa today. I think there is a lot going on there-she wants help but won't come out and ask, she wants to just get on with her life (she had planned on starting college this semester), and she wants me, the responsible child, to just come and deal with it. But I have made a promise to myself and Aaron, that I come first and my health definitely comes first!!! So that is what I am focusing on. I am just trying to take it one day at a time.
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