Time for Phase II of Operation Cancer-Free Katie. I've been home for three days now and, although it's wonderful, it poses its own challenges. Since I am still really immune-suppressed, I am sort of on house arrest. Public places are off-limits to me, as well as kids with coughs and runny noses (which means I can't quite hug and squeeze Zach like I want to at the moment) ... I can go to clinic and I can go home and that's about it.
I CAN, however, walk outside (as long as it's not too sunny) and have enjoyed walking part-way up Ring Mountain with Marlene after dinner. Moments like these I'm surprised how good I feel ... but the tide can turn just as easily and I find myself horizontal and nauseous, watching still more episodes of "Sex in the City."
I had my first clinic visit yesterday, which went really well. My blood counts are all really good and the only supplement I need is magnesium, which Ian administers by IV every night through one of the tubes sticking out of my right arm (officially, it's a double "pick line" for easy access). Since we're on Day +16 out of the critical first 100 days, I'm hoping for 84 days of smooth sailing, but my Nurse Practitioner says I can expect some form of GVHD (Graft vs. Host Disease) around Day +30. GVHD can be mild or severe and usually comes in the form of rash, gastro-intestinal distress or liver problems ... and the weird thing is that it's better to have some GVHD than none (it's evidence that the graft is doing its job and killing the cancer). I am hoping for the rash. Let's all put that out there.
It's also a little nerve-wracking being away from the hospital. Take yesterday, I start getting these terrible cramps ... and I start thinking, "Uh-oh, what is this? Do I have GVHD already? Is it serious?" and, because all of you who know me know my tendency toward worst-case-scenario, "Is this the end?" Anyway, a call to the clinic and a prescription for Vicadin later, I'm horizontal and watching "Sex in the City." Having to tune into and monitor what's going on in my body like this is my worst nightmare. It was much more reassuring to have the nurse come in every couple of hours, take my temperature, blood pressure, etc. and say "You're OK."
Has it been 84 days yet?
You might want to know what I've been doing for fun through all this ... I'm making the most of my baldness, of course. I already have a selection of groovy wigs, but yesterday I had Marlene stop at my favorite wig store (Helen's Wig on Divisadero) and purchase a cotton candy pink wig, which I love (picture to come). Zach just loves it. He says, "Mommy, put on your new pink hair!" (he doesn't like to see me bald). Too bad this isn't Vegas.
Some of you have asked if you can visit and the answer is yes, as long as you're healthy and you leave your kids at home. I have clinic on Tuesdays and Fridays, but otherwise I'm likely around. Feel free to keep those emails coming, too.
much love,
Katie
Comments (17)
It sounds like wearing a wig has its upsides, comedic relief and no more bad hair days unless want them. Take a picture, I want to see what cotton candy hair looks like.
Curtis
Posted by Curtis | July 4, 2008 1:52 PM
Posted on July 4, 2008 13:52
Hey Katie-
Happy 4th.
Glad to hear you're home. If I'm out and I happen to see a good wig, would that be a good gift? I promise no rainbow-afro wigs... unless Zach thought that was cool.
CL
Posted by Chris Leavell | July 4, 2008 2:27 PM
Posted on July 4, 2008 14:27
Dear Katie,
So gald to hear from you and you sound like you are relaxing somewhat. What is Clinic? I guess that it is where you get your infusions, right? Glad that you have some fun wigs. The baseball hats should be arriving in a couple of days. If you don't want to wear them, my guess is that Zach will.
Happy 4th of July!!! I am at work and had a few minutes and found your latest POST. I want to get my 2100 med pass done and maybe we can see some fireworks-we are on the 3rd floor.
Talk with you later.
Much love,
Mom
Posted by Mom | July 4, 2008 5:52 PM
Posted on July 4, 2008 17:52
A Glorious Fourth to All!
The monsoon arrived yesterday. When I took Tootle out last night, I got hit with 5 drops of rain! Points east of us got real rain. The Monsoon is technically a shift in the direction of the wind. Instead of weather coming in from the West, I now scan the eastern sky for clouds. Gulf moisture is pumping in--so much for "dry heat." The humidity is up to 39%. Combine that with 109 degrees and get something called the "misery index." During the monsoon Phoenix can get humidity to rival Washington, DC. Fortunately, that does not happen often, but the air now seems heavy.
When the monsoon triggers rain, it can come by the buckets. The hard-packed desert cannot absorb it and flash floods result. Arizona has a law with the great title of "The Stupid Motorist Law." If a stupid motorist drives into a posted intersection or wash and gets carried away by the water, the stupid motorist gets to pay for rescue. It takes only 6-10 inches of moving water to sweep a car down stream.
The Haboob is the dust storm that often preceeds monsoon rain. In some cases it becomes a wall of dust hundreds of feet into the air. Haboob pictures can be dramatic.
Okay, so that is more than you ever wanted to know about desert weather; but how much did you want to know about double pick lines and such? There is much to be said for learning on a "need to know basis." I am so very glad that Ian has learned to do needed injections so that Katie can be at home.
May Lady Liberty shine on us all! Hurray for Freedom!
Eva
Posted by Eva | July 4, 2008 7:21 PM
Posted on July 4, 2008 19:21
Dear Karie,
I missed the fireworks becasue I had my work done but got an admission and had to pur on a telemetry monitor, put in an IV, put in a catherter, and do the whole admission, put the chart together, and put all the orders in the computer. So that took 3 hours. Oh, well the night will go fast, fast, fast. I'm just starting working on my charting and cahnging over my mediaction sheets and ddoing my 24 hour chart checks. I also have to put traction on his leg for a hip fracture. But we cannot find it anywhere.
Not much happens when I work except work.
Boots, the new kitten is doing well. He is a lot of fun and is minding pretty well. I am using a flyswatter to discipline him an dhe does not like it.
Well, got to go. Talk with you soon.
Love,
Mom
Posted by Mom | July 4, 2008 11:20 PM
Posted on July 4, 2008 23:20
So happy for you and the cotton candy pink wig. You needed that. Can't wait until you get to season of Sex & the City when Samantha "gets wiggy with it." It might fuel your barely latent wig addiction, which is now coming in handy, I might add. Looking forward to visiting soon.
Shona
Posted by Shona Mauro-Sachs | July 5, 2008 9:54 AM
Posted on July 5, 2008 09:54
Hey Katie! I'm hoping Zach recovers from his sniffles quickly, so you can cuddle him as much as you want!
Your new pink wig sounds wonderful. You may need a boa, too, to feel completely fabulous. O Magazine, of all places, had a mini review of a hair product for "the hair down there." (That's what they called it; we know it's called pubic hair.) I believe it's available in pink, if you know, you want the carpet to match the curtains.
It sounds like Ian's taking good care of you, good man! And though you may very well feel part-Borg now, well, sometimes Borginess can be useful, as when you want to avoid getting stuck multiple times with a needle in a vain attempt to find a vein. In any case, you will always be the most fabulous Borg-ette I know. (Now imagining the Rockettes with extra technological features.)
Today Rob and I wandered around the city, enjoying having the day together. He's trying to impress at th office, so he's been working late most weekdays. We stocked up on groceries because everything in Munich, other than the pure tourist stuff and McDonald's, is closed on Sundays. No access to groceries! Just typing that makes me anxious!
Thanks for the Cooking Light recommendation. I'll check it out. I've been managing ok so far, but let's just say it's good that corn flakes are cheap, because it's not unusual for us to supplement our meals with that!
Today we did stumble upon a street of Turkish markets, which was a great find. A large number of immigrants in Munich are Turkish, so döner kebabs are easy to find, but it was really exciting to find whole markets of spices and ingredients, including manti, Turkey's tiny take on dumplings. Naturally, I've been taking photos of all our meals, so I'll do a food post soon.
Thinking of you, sending good GVHD vibes!
love,
Charlene
Posted by Charlene | July 5, 2008 2:31 PM
Posted on July 5, 2008 14:31
(From Grandma) Dear Katie,I keep thinking of you all the time. I re-live the days that you, Peter, and I used to play on the dining room floor. We used to play house and those things that were fun. We always had fun. Also the days your mom and dad were gone and you would help me with Peter so much so we could go out to get something to eat. Remember the time I go lost with the car when we took your mom and dad someplace? When you were in CA and I drove your dad's car, how frightened I was, but we finally got where we were supposed to be (some kind of gathering?). Okay, Katie. Remember I am praying for you every day and so are the ladies at church. They ask me all the time how you are doing. Do remember that I think of you, Zach, and Ian all the time and have you all in my prayers. Love, Grandma.
Posted by Aunt Kathy | July 5, 2008 3:21 PM
Posted on July 5, 2008 15:21
(From Grandma) Dear Katie,I keep thinking of you all the time. I re-live the days that you, Peter, and I used to play on the dining room floor. We used to play house and those things that were fun. We always had fun. Also the days your mom and dad were gone and you would help me with Peter so much so we could go out to get something to eat. Remember the time I go lost with the car when we took your mom and dad someplace? When you were in CA and I drove your dad's car, how frightened I was, but we finally got where we were supposed to be (some kind of gathering?). Okay, Katie. Remember I am praying for you every day and so are the ladies at church. They ask me all the time how you are doing. Do remember that I think of you, Zach, and Ian all the time and have you all in my prayers. Love, Grandma.
Posted by Aunt Kathy | July 5, 2008 3:21 PM
Posted on July 5, 2008 15:21
Hey Katie (and Ian),
I've been wanting to know how things were going, but hadn't had the link to your blog until today (thanks Ian!). It was really great to read through and see how you've been. The neighborhood isn't the same without you! Imagine missing the 4th of July Florida Street Maddness!
83 to go!
-tim
Posted by Tim Lockie | July 5, 2008 8:48 PM
Posted on July 5, 2008 20:48
Dear Katie,
Hope are is going well with you today. Think of you often. It's 0100 on the 6th already and I am at work and taking a small break before I go back to my paprework.
Remember I told you that DDon and I were going tot he Farmer's Market on thursday? Well, we wernt and it turned out to be a whole 3 tables and one of the tables was Don's cousin.
she sold me a bag of cukes and zuchini for a $1.00. That made Don and laugh, because we almost passed it by. But we got to go out to dinner and then stopped by a ranch which was having team roping. I really like this kind of stuff. Ihope to learn to ride someday and eventuallly get a horse.
Well, back to the paper work.
Love you much,
Mom
Posted by Mom | July 5, 2008 11:16 PM
Posted on July 5, 2008 23:16
hey Katie! We're counting down the days with you and hoping they fly by without too much incident!
I did my food post. It reads like an ode to sausage.
http://www.charlenelam.com/blog/?p=394
Munich is really lovely, but I decided to move my flight back to NYC up about a week. I just can't sit back and enjoy eating all this sausage when there's a whole apt in New York to pack! I'll be sorry to be apart from Roberto again so soon, but he'll be out there 2 weeks after I get there. ::shh:: Keep it on the downlow -- I'm not going to tell too many people, so I can just focus on packing when I get there! Also, I don't want people thinking I don't like Munich -- I do, I would just prefer to be in a place wholeheartedly, and I can't do that with my brain divided by an ocean. I can really live it when I'm actually done with my move.
much love,
Charlene
Posted by Charlene | July 7, 2008 12:38 AM
Posted on July 7, 2008 00:38
Glad you are home. And love that you will have a cotton candy wig. It will be so cool and fun to wear.
None of us can really imagine what this is like and I'm so happy you are blogging about it your journey. Who knows ... you may have a best seller on your hands??? (Don't you just hate the person who gives homework)? :-)
Katie, my dear, I'm sending you good thoughts and lots of good energy. Off to NYC for 2 weeks.
HUGS! Susan
Posted by Susan RoAne | July 7, 2008 1:15 PM
Posted on July 7, 2008 13:15
Congrats on 16 days and a cotton candy wig. Can't wait to see the picture. Hope you get to hug and squeeze Zach really soon.
Posted by Liz | July 7, 2008 4:49 PM
Posted on July 7, 2008 16:49
Ok--this will be of little interest to anyone but Zarlings. Are Zarlings reading this blog?
Carl was on a 14' ladder changing a light bulb in his barn. He and the ladder fell. He is a banged up mess who was flown to Harborview Hospital. The good news is that no injuries are life threatening. He has no neurological deficits. He is telling people that he encountered a bear-ha! His right elbow is so smashed that no joint can be seen on the xray. He has had one surgery to clean it up. The reconstruction surgery is expected 7/8.
I was able to talk with him today. Of course, I told him that I will be glad to come to Seattle or Yakima to help in any way. Carl's response was, "Well, there are still four lights in the barn that need to be changed."
Hope you are doing well, Katie. I await a new blog entry. Lovingly, Eva
Posted by Eva | July 7, 2008 7:00 PM
Posted on July 7, 2008 19:00
I loved your article on "Home Sweet Home." We're cheering you on all the way and following your journey. Hang in there.
Posted by Jamie Zarling | July 7, 2008 7:50 PM
Posted on July 7, 2008 19:50
Dear katie,
How are you today? I am all messed up and thought that this was MOnday and I was going to ask you how Clinic was. I was so tired yesterday that I slept until 7pm and went back to bed at 10pm and slept until this morning. I felt lots better today. That hospital sure gets its money's worth out of me.
I went to Stillwater today and got my hair colored and cut. then I went to my meeting and out to luch with a friend. Then I did some errrands and came home. I bet I spent almost $400 with all the errands, my hair, and gas. Almost makes me sick.
It eained today and we really needed it. I hope it rains tomorrow. I am staying home all day and take the shovels to the house, it really needs cleaning and the laundry needs caught up.
Don bought me 2 beautiful house plants. One is a Calalily. I had 2 beautiful ones back in CA and it just make me sick to ;eave them behind. I did find a friend who has a green house and she took my plants and said that I could visit them anytime. I was so pleased that he remembvered. Last year he got me a chair for my computer and my legs don't swell anymore. he realy gets me some thoughtful things.He thinks that I won't like the things that he gets but I really do and am so surprised.
Boots is quite a character and follows me everywhere. I really like having him around. But I still miss Mitty.
Well, got a few more things to do before I go to bed. Take care and I'll talk with you soon.
Much Love,
Mom
Posted by Mom | July 9, 2008 7:16 PM
Posted on July 9, 2008 19:16