Okay, let's see... W & B had a baby boy on Valentine's Day!!! He's beautiful, growing, so lucky to have such patient, mellow parents. B was amazing during the labor & birth. The baby has very light brown hair, a surprise since his mom and dad both have (well, W had) dark hair. He does not have a name yet. No big hurry. Congratulations!!!!
I will not be taking the chemo drug Cytoxan, at least anytime in the near future. When I saw my doctor team on the 16th, they decided another immunosuppressant, Cellcept, would be best. I think the idea is to wipe out any & all autoimmune inflammation in my body, then see if that brings down the pulmonary hypertension.
For a while I've suspected that Lupus might not be quite the correct diagnosis for me. It is almost the only explanation for my pericardial effusions and a few other things, but with certain ANA (antibody) tests, my results show patterns most common in scleroderma patients. Add to that my autoimmune dry-eye thing, most often seen in Sjogren's syndrome... The rheumatologist thinks I have 'autoimmune overlap'. It doesn't change my treatment, it just makes it harder for me to explain all this crap to other people! I'm still just going to call it lupus.
The worst part of it is that PH associated with scleroderma has the worst prognosis of any PH. This hill is just getting steeper.
After W went back to Nome we had a pretty boring week. We did go to the Bering Straits Native Corporation reception for shareholders. Dad was back in town for that since he's a board member, and his wife is a vice president so she was at the meeting too. I tried saying hi and bringing the kids to talk with her but as usual that didn't work out. She's pretty good at ignoring people. Whatever. The rest of the meeting was great, seeing so many people from home, watching the King Island Dancers, and hearing about the BSNC financial operations. R did a little eskimo dancing too during the invitational dance. On Friday, the kids and I had lunch with my two sisters and my dad. Good to see AuntieJ!
Last week, a high school classmate of mine died. He was only 36. He had always been a heavy drinker and his liver was in pretty bad shape but the last I'd heard of him, he was doing better. Peace to you always Truman.
LittleK got to accompany Gramma & Grampy to a fiddle dance last night. She of course insisted upon dressing in her own unique way (purple T-shirt, red velvet jumper dress, white tights, black ankle boots...) which we tried to modify and failed miserably. What a scowl she has. Somehow she ended up going dressed as she pleased, with a HappyMeal promise fulfilled (it was supposed to be a ChangeYourClothes bribe), a new friend and ten seconds of fame singing 'You Are My Sunshine' on stage. So when she makes her first million as a ballbreaking lawyer I expect a little credit.
Sunday, February 25, 2007
Sunday, February 11, 2007
Happy Birthday W
No baby yet...
My nephew had his eighth birthday on Friday and we celebrated Saturday, at Anchorage's big indoor waterpark. It was huge, fun, expensive, LOUD and unbelievably hot there. The whole thing made me wish I was five years old again - crowds, chlorine, slides, a wave-maker, a pirate ship, pizza, Pepsi... The kids loved it!
Dad visited, nice to finally see him again. R cuddled with him right away. LittleK mostly ignored him. Having three sets of grandparents can be confusing. We didn't manage to get my other sister and my other brother to join us, but we can try again the next time Dad's here.
Here's some information I found on cytoxan treatments for Lupus.
I've been cheating with my oxygen. I do keep it on at night and during most of the day, but there are times when I feel like leaving it off for a few hours. I really hate it. Imagine getting a 40-foot leash, strapping it onto your head or face or neck, anchoring it to a noisy whooshing box and attempting to go about your day like that. Yeah. It does provide some laughs once in awhile, like the time T was so angry at me she screamed, "I'M GONNA STEP ON YOUR OXYGEN TUBE MAMA!!!!!!!"
My nephew had his eighth birthday on Friday and we celebrated Saturday, at Anchorage's big indoor waterpark. It was huge, fun, expensive, LOUD and unbelievably hot there. The whole thing made me wish I was five years old again - crowds, chlorine, slides, a wave-maker, a pirate ship, pizza, Pepsi... The kids loved it!
Dad visited, nice to finally see him again. R cuddled with him right away. LittleK mostly ignored him. Having three sets of grandparents can be confusing. We didn't manage to get my other sister and my other brother to join us, but we can try again the next time Dad's here.
Here's some information I found on cytoxan treatments for Lupus.
I've been cheating with my oxygen. I do keep it on at night and during most of the day, but there are times when I feel like leaving it off for a few hours. I really hate it. Imagine getting a 40-foot leash, strapping it onto your head or face or neck, anchoring it to a noisy whooshing box and attempting to go about your day like that. Yeah. It does provide some laughs once in awhile, like the time T was so angry at me she screamed, "I'M GONNA STEP ON YOUR OXYGEN TUBE MAMA!!!!!!!"
Thursday, February 08, 2007
treatments make you
BETTER
Treatments make you better, treatments make you better...
K and I have been researching Cytoxan. I had to cry the other day, thinking that now my family has to put up with me getting chemo, after we've finally recovered from my psychoticmonstermama days of predisone treatment. There's another tunnel ahead.
I decided it'll be best to stop babysitting my niece. I think at this point zero responsibility sounds appropriate. Zero stress would be nice... but I am after all in my thirties and living with my parents, a tv-addicted overly willful four-year-old and a toddler who doesn't yet realize that stairs are a major hazard.
Oh, and I don't have my car.
TV comes in handy for escapism I guess. There are two shows I hate to miss, Lost and Grey's Anatomy. I have that sort of militant SHUTUP IT'S ON attitude which maybe makes people uncomfortable. Heh heh. I like to think it comes from a real appreciation of storytelling... can't miss a thing. Anyway, the kids' bedtimes are all messed up because of it. LittleK will soon be doing her best to convince me that it's not bedtime if the sun is still up, so I don't see much hope for any solid schedule until September.
Dad's returning from a business trip to Puerto Rico and will be spending the next couple of days here in town before heading back to Nome. My two brothers and two sisters are here, so we'll probably get together for lunch and a photo op. Dad hasn't met R yet! This weekend we'll also be celebrating my nephew's birthday, and hopefully also the birth of my brother's newest child.
Time to go and enjoy Elvis on the ol mp3 thing.
Treatments make you better, treatments make you better...
K and I have been researching Cytoxan. I had to cry the other day, thinking that now my family has to put up with me getting chemo, after we've finally recovered from my psychoticmonstermama days of predisone treatment. There's another tunnel ahead.
I decided it'll be best to stop babysitting my niece. I think at this point zero responsibility sounds appropriate. Zero stress would be nice... but I am after all in my thirties and living with my parents, a tv-addicted overly willful four-year-old and a toddler who doesn't yet realize that stairs are a major hazard.
Oh, and I don't have my car.
TV comes in handy for escapism I guess. There are two shows I hate to miss, Lost and Grey's Anatomy. I have that sort of militant SHUTUP IT'S ON attitude which maybe makes people uncomfortable. Heh heh. I like to think it comes from a real appreciation of storytelling... can't miss a thing. Anyway, the kids' bedtimes are all messed up because of it. LittleK will soon be doing her best to convince me that it's not bedtime if the sun is still up, so I don't see much hope for any solid schedule until September.
Dad's returning from a business trip to Puerto Rico and will be spending the next couple of days here in town before heading back to Nome. My two brothers and two sisters are here, so we'll probably get together for lunch and a photo op. Dad hasn't met R yet! This weekend we'll also be celebrating my nephew's birthday, and hopefully also the birth of my brother's newest child.
Time to go and enjoy Elvis on the ol mp3 thing.
Saturday, February 03, 2007
Just hoping
So.... my life is so busy I can't even sit down and write about it.
I started babysitting my sister's youngest daughter. She is a sweet baby and she's very easy to take care of. She has fat little legs and pretty eyes. I love how she falls asleep in my arms! R doesn't do that since he figured out that there's a whole world of things to dig in and look at and/or taste. He and LittleK come along to my sister's house, weekdays from 8am until1pm.
My brother and his girlfriend are waiting for their baby to be born! Its due date is February 10th. They're also staying here at Mom's house, and his sons come to stay every weekend, from Wasilla.
I think the mood around here could be described as quiet anticipation, except for when the pack of cousins is running around screaming.
I need to fill in the details of my trip to Denver & Laramie. I left here Sunday, January 21st. It was strange but also comfortable to be back there. I left LittleK & R here with my parents. Monday morning after dropping T off at school, K & I drove to Denver and I had tests done, including: a V-Q scan, chest xray, pulmonary function tests, and an echocardiogram. I haven't seen the results for any of those except the PFTs. We spent the night at Angus & Olive's B&B... Tuesday morning I had a right heart catheterization. It's basically a long skinny tube inserted into my jugular vein and pushed along to my heart where specific pressures are measured. I don't have the official results yet, but I think it did show a decrease since my last echo in September. We talked to the PH specialist, Dr. Voelkel, who told us it makes sense for me to transfer my care to the specialist in Seattle. He also recommended a couple of medication dose changes and suggested Remodulin or Rituxan as possible new therapies. I spent the rest of the week in Laramie (hey ladies!!) relaxing, visiting, and making Girl Scout swaps with T.
Since coming back to Anchorage, I've seen an ophthalmologist, optometrist, pulmonologist, and I met ANMC's new rheumatologist. I finally met Susan, the case manager in Internal Med whom I've been harrassing over the phone since November. The opthalmologist put a new punctal plug in my funky right eye. The pulmonologist is planning to put me back on an immunosuppressant, specifically Cytoxan. She said it's been shown to completely eliminate PH in some patients with Lupus & PH. She also explained that what I have is not yet massive scarring but (possibly reversible) inflammation of my lung tissue. I haven't felt this hopeful in a long time.
K and T have been busy in Laramie. Today he was putting up moulding - I wish I could've seen that. T's new project is dog-training. She ordered a whole kit for it through the school book order. It's probably working out great, since it's been so freezing in Laramie that the dog actually gets to be inside. Our girls have always been into Super Bowl parties: making menus, preparing the food, making decorations for the house, etc. So that's next on everyone's list.
Well, if you just can't get enough of my jaw-dropping eye-popping life story, come back next week. I may even get to show pictures of the new niece or nephew... if not you'll just have to settle for some shots of my new post-prednisone hairdo.
I started babysitting my sister's youngest daughter. She is a sweet baby and she's very easy to take care of. She has fat little legs and pretty eyes. I love how she falls asleep in my arms! R doesn't do that since he figured out that there's a whole world of things to dig in and look at and/or taste. He and LittleK come along to my sister's house, weekdays from 8am until1pm.
My brother and his girlfriend are waiting for their baby to be born! Its due date is February 10th. They're also staying here at Mom's house, and his sons come to stay every weekend, from Wasilla.
I think the mood around here could be described as quiet anticipation, except for when the pack of cousins is running around screaming.
I need to fill in the details of my trip to Denver & Laramie. I left here Sunday, January 21st. It was strange but also comfortable to be back there. I left LittleK & R here with my parents. Monday morning after dropping T off at school, K & I drove to Denver and I had tests done, including: a V-Q scan, chest xray, pulmonary function tests, and an echocardiogram. I haven't seen the results for any of those except the PFTs. We spent the night at Angus & Olive's B&B... Tuesday morning I had a right heart catheterization. It's basically a long skinny tube inserted into my jugular vein and pushed along to my heart where specific pressures are measured. I don't have the official results yet, but I think it did show a decrease since my last echo in September. We talked to the PH specialist, Dr. Voelkel, who told us it makes sense for me to transfer my care to the specialist in Seattle. He also recommended a couple of medication dose changes and suggested Remodulin or Rituxan as possible new therapies. I spent the rest of the week in Laramie (hey ladies!!) relaxing, visiting, and making Girl Scout swaps with T.
Since coming back to Anchorage, I've seen an ophthalmologist, optometrist, pulmonologist, and I met ANMC's new rheumatologist. I finally met Susan, the case manager in Internal Med whom I've been harrassing over the phone since November. The opthalmologist put a new punctal plug in my funky right eye. The pulmonologist is planning to put me back on an immunosuppressant, specifically Cytoxan. She said it's been shown to completely eliminate PH in some patients with Lupus & PH. She also explained that what I have is not yet massive scarring but (possibly reversible) inflammation of my lung tissue. I haven't felt this hopeful in a long time.
K and T have been busy in Laramie. Today he was putting up moulding - I wish I could've seen that. T's new project is dog-training. She ordered a whole kit for it through the school book order. It's probably working out great, since it's been so freezing in Laramie that the dog actually gets to be inside. Our girls have always been into Super Bowl parties: making menus, preparing the food, making decorations for the house, etc. So that's next on everyone's list.
Well, if you just can't get enough of my jaw-dropping eye-popping life story, come back next week. I may even get to show pictures of the new niece or nephew... if not you'll just have to settle for some shots of my new post-prednisone hairdo.
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