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.

1 comment:

  1. I am so glad you are keeping this blog, Brandi! Now I can stay caught up on your life since I am not always on FB!! I had no idea that your mom & brother had moved out?! That's how far behind I was?!?! It's sad that those family issues remain....I totally understand as it's the same w/my father. I'm 34 & he's 51 and it's the same crap!? (sigh). I'm praying for you and will keep in better touch now :) Love, Jen