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:
"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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