Advance warning- world’s most out of order, disjointed blog post. But posted is better than nothing, and so I resolved to try to stay awake until I at least put a few photos up from my current adventure…. skipping over the fact that I have the photos cropped and queued for Halloween, and the text done for Thanksgiving. Since I last blogged here, Kelle has blogged about my story, and Julia has shared the DeHority Distraction Principle with the world…. But if I waited to get caught up, in order, it would never get done. You see, I am in England. Sort of a grown up Make-a-Wish trip… official Wish trips are limited to people ages 3 to 18, but my husband, my friends, my family and my oncologist all decided that was silly, and if I wanted to go see my sister in England, they were going to make it happen.
this one, of flying to England in business class, complete with champagne and socks…
And this one, from Colourmart, home of all the cashmere that the socks come from, in Shrewsbury. I had this list, you see, of very specific things I wanted to do and see in England, which had to be very limited because I just don’t have lots of strength and energy….
Although traveling with a wheelchair has really helped, even though I resisted it for a long time. Like I totally resisted it until every single person involved in making this adventure possible said that they were not going to cooperate until I agreed. And they were right.
Anyway, mostly I wanted to see my sister, and her family, but I also wanted to go out for fancy English tea in London…so here were are at Brown’s Hotel – VERY POSH – having champagne tea late this afternoon.
And I wanted to see my nephew’s school – Manchester Grammar School – which has been around since 1515. No kidding. The boys (it’s only boys at this school) wear coats and ties to class every day.
Nicholas here, looking spiffy, and then David:
But even older than their school was the pub we went to the day before – in Shrewsbury, where those cashmere cones came from.
The Golden Cross, where we had lunch with all the Colourmart folks, has been in continuous operation in this location since 1488. …. sorry this is so out of order…. it’s been a long day….
But one last out of order photo anyway for my sock sisters – knitting on the train on the way from Manchester, where my sister lives, to London, this morning. Tomorrow, a few more things on my wish list – a shopping trip to Liberty, and some tourist time at Westminster Abbey… then we have reservations for another fancy afternoon tea at the Langham…. Saturday we fly back to Charlotte to resume intensive chemotherapy and real life….. and oh my goodness, how I miss Dixon and my babies… skype just isn’t good enough….
I have taken HUNDREDS of photos in just a few days, but if I don’t quit now and go to sleep, I won’t feel good enough for my wish list tomorrow…. so good night, love and hugs from London
Day 16 overall. But I didn’t get to have chemo on Tuesday. My white blood cell counts, marginal on their best days, were all way too low. It wasn’t even close to possible. But those first two rounds were still hanging out in my hair follicles, doing their work. People lose their hair on this drug between day 14 and day 17. One of the other chemo drugs i had been on until September was supposed to cause hair loss, but mine had just gotten really thin, so i was thinking that maybe I was going to escape with my hair intact.
Until I woke up several times last night terribly itchy from the piles of hair that had fallen out and worked their way down my shirt in my sleep. So it was obvious that we might as well buzz it off.
Danny wanted to help but was so afraid of hurting me. So he passed the clippers off to Dixon and decided to take care of the camera instead.
George was fascinated by the process. If I were allowed anywhere near his classroom (which I am not, my oncologist has put me on kindergarten restriction until further notice, which breaks my heart, I LOVE being in that class….) I know from my other times of baldness that all the other 4, 5 and 6 year olds will be dying to touch my head and try on my hats and scarves….
I’m confident I’ll still be bald when I can go back to school….. they will all get a chance to rub my head…. good thing I don’t have personal space issues….
My parents were here again for the chemo that didn’t happen. This unpredictability is hard to deal with. Everybody wants to know what we need and when they can help, and it’s hard to sort out when I don;t even know when my treatments are going to happen. So they left this morning, my mom has cataract surgery next week so they can use a couple of extra days at home to get their ducks in a row,
But before we left, I wanted to show her about the magic of Alter Ego dyes. Plus it’s hard being away from her when she goes back, and I had this idea that if she and my sister Jane and I had matching scarves, that would help in a little way. So we made a big square headcover for me and pretty rectangular scarves for my mom and Jane.
They actually coordinate better in real life, it was hard to get the colors right with the flash.
In other news, remember my dream lymphedema sleeve? The president of Solaris, the company that makes them, said that they would be more than happy to do whatever it takes to get me the perfect sleeve. But I wanted to try the conventional route first, so my dad drove me to Winston Salem yesterday to a medical supply place that does the custom fitting to order them, and they put it through my insurance which said they would pay 100 %!!! It has been ordered and will arrive in about three weeks. I can’t wait until it’s ready (although I have to go back up to Winston Salem again to pick it up, they have to check the fit and the pressures with me in person… )
Here comes Danny back from school-school. Gotta go. Thanks again for all the love and support.
chemo makes everything harder. brian and i were watching an old episode of the Cosby Show tonight (Dixon and Danny are away camping at Mt. Mitchell) and in this episode Dr. and Mrs. Huxtable are both sick in bed with the flu. I know they said it was the flu, not chemo, but they could really have done a good job acting post chemo day 4, no problem. But if you want to know why chemo and blogging are incompatible, go watch that episode. season 3, episode 22,from April 7, 1987….
So anyway , since my brain isn’t up to a blog post with a theme or a plot or a big message, I took 17 or 18 consecutive snapshots from my little camera, and here they are. chronological life unfiltered.
So you know we got our new washer, which is great. it makes really pretty music when you turn it on and when the cycle ends. the only problem was that to get it into our house we had to unload and move an 8 foot tall double stuffed bookcase that was about two inches too close to the door.
I briefly considered decluttering some books before putting them back but my brain was too tired (see above)….
So I went to take a nap with george instead and let everybody else put the books back.
speaking of repairing and replacing, this is cool, even though the photos don’t do it justice. our ceiling light in the kitchen had been broken for ages, so my dad put in a new one… with LEDs. Looked pretty unpromising at first, i was worried i wouldn’t even be able to see well enough to do dishes.
WOW! Major bright, really fast. It’s supposed to save lots of money on the power bill, but I actually like it because it looks so cool…
even with the cover on….
speaking of cool, have I ever told you my parents are cool? Here is my dad trying to explain to my mom about taking a selfie. I suspect she already knew about this but didn’t want to make him feel bad
my parents were here for my first round of chemo, but Dixon was off for the second, so all the preparations fell to him… getting me ready, my chemo stuff ready, boys ready for school all first thing Tuesday morning when Dixon had worked at the hospital all night monday night was a bit of a challenge. and yes, we are still doing the many layers of lymphedema bandages, but hopefully just for a little while longer. You know that dream sleeve?
Turns out my insurance just might cover it, but if they don’t, the president of the company has offered to have one made for me. No kidding. we will find out wednesday, (next post chemo day one, my dad is going to drive me to winston salem to an authorized retailer of Solaris Tribute sleeves to get measured and see….)
and we can’t forget port management. it’s been accessed way too many times lately to skip the numbing cream.
Take a break from chemo preparation to get boys ready for school. anybody who says sending their kids away to school every day is easier than having them home has never forgotten about picture day on chemo day until 7 minutes before the first bell rings.
So one of my friends sent me a box of treasures from her kids, and tucked in some wonderful relaxing essential oil, but mentioned in her letter that she puts it on her wrists and walks around looking like a dork sniffing her wrists all day. Well, I have no problem at all looking like a dork, and this oil really does smell so peaceful, so I applied it liberally to my wrists and took a big sniff. Therefore I got it all over the bottom of my nose and didn’t have raise my wrists to my nose even one time all day…
Quick break from getting ready to block Lark’s socks. Lark is my knitting friend. Lark is about to have a new baby brother, don’t even ask if his sweater is done….
meanwhile dixon is getting the ice bags ready. 80 % of people on my chemotherapy get nerve damage from it, but there are some studies that show that decreasing the circulation to your hands and feet by putting them in a near-frostbite situation can help prevent this. It decreases the blood flow to the cold places, so the chemo doesn’t settle there. Obviously you wouldn’t want that for your brain or your liver, but metastases to your feet are pretty uncommon.
Poor Dixon. getting the ice together was the last straw, being post call and all. one. tired. daddy.
but we got to chemo, my blood tests were bad but they went ahead anyway, my blood pressure was way low, but they went ahead anyway, and during the 30 minutes of main infusion time and the 40 minutes to get every last little molecule out of the tubing we did ice. hand knit wool socks felt so good after
remember the recipes on the outside of the cabinets? This is one, from my blogless friend Susan ( if I weren’t so tired I’d do the linky thing to my blog posts about her crazy adventures….) and she wasn’t content this week to just let me have my long-taped recipe, she showed up with a real genuine darling’s lasagna… and stayed and chatted for a good long time, which made me happy.
and this weekend, major flashbacks to a whole different life… dixon and danny were assembling camping gear, and an old gore tex jacket of mine was the closest thing we had to fit danny… but it had been hiding in the closet since my last ski trip almost 20 years ago. Rosemary, those were amazing weeks, weren’t they????
So there you go. chemo week two. The current plan is that my parents will be back monday, and i will have round three on tuesday. but now I am going back to sleep. Love and hugs, esd
Go see Julia’s blog for the whole story, it’s a long post but you need to start at the top and just read on down.
I am so happy that so many of my friends have linked in their blogs and shared on facebook. Sometimes it amazes me, that you can save a person’s LIFE for basically the cost of ONE of my chemotherapy treatments now. Sort of makes me feel guilty sometimes, the unequal distribution of resources. But it’s been a fun distraction this week, watching the numbers grow and even learning that a family is moving mountains to rescue a boy with only days to spare.
Today is post chemo day 3, supposed to be the worst. My parents are here. I am on my way to the hospital to try a different sort of ultrasound to see if we can get more accurate measurements of my tumor, to find a good way to follow the changes. This weekend is the Saint Ann parish carnival… cotton candy and snow cones sound good.
All last week I felt like I was leading these two parallel lives… one half of my heart and my consciousness was preparing for my new chemotherapy, and the other half was diligently trying to pretend that this was just another very busy mama week. Which I loved. Danny was the student chair for a big invitational golf tournament… to benefit the Allegro Foundation. Somewhere on the internet is a link to a video of a speech I gave at their Ambassador’s Ball a few years back…. maybe Esther can find it?
The Allegro Foundation provides movement education to hundreds of kids with physical and intellectual disabilities…. Danny is NOT a golfer. So his speech (which admitted this fact) was truly wonderful. I have a video, but I need emily to assemble it and teach me how to post is… The golfers laughed so hard, Danny had them all in the palm of his hand. ALL DAY. He rode around the tournament in a golf cart meeting and talking to the players, including important Charlotte business guys, current and former professional athletes, all sorts of folks. I wasn’t with him for that whole middle part of the day , his RN Delacey was on duty for the majority of it (but I DID see his speech )
But even though Danny isn’t a golfer, he is the most amazing “people person” ever. He has an uncanny ability to remember people’s names, long after even just one brief introduction. And he had done his research about many of the players who were there to support Allegro, so he was able to chat confidently with people that I would have been seriously intimidated by. It was such fun to watch…
Back to the rest of the week…. knowing it was the last one before my first chemo, I wanted to better address the lymphedema issue. See that little folded sleeve up there? For several years, if i was meticulous in my lymphedema management, I could wear that sleeve on my arm during the day. Then came more cancer and the blood clot and …. no more sleeve.
All this wrapped around is what we have now. Rewrapped twice a day as it slides down or gets painfully tight if my arm has been hanging down and the swelling is worse, or if it gets totally soaking wet
Did I tell you our dishwasher and clothes washer both died? They have now been replaced, (and it’s crazy how hard it is to have something installed on a saturday…. they would have been happy to DELIVER them, and leave them right in the middle of my kitchen and laundry room, and then send somebody to install them in 10 to 14 days. HA! True confession, (and I NEVER do this….) I used the “I have cancer and I am starting chemo, yadda yadda…. ” and it was amazing how fast they found someone who could fix it.
But anyway, this lymphedema wrapping this is a pain,pain,pain. Lymphedema plus blood clot plus growing tumor equals a big problem. There are great user friendly solutions, but of course we want our medical insurance to pay for them, and the closest in-network place to buy these things is in Winston Salem. I had long been planning going up there, getting established with the lymphedema products store there and getting to see Betsy at the same time, but obviously that’s just not going to happen for now. If I COULD get back and forth several times (for measuring, insurance pre=approval, getting prescriptions and letters of medical necessity, picking up, etc.) this is my dream sleeve:
This thing is called the Solaris Tribute. Instead of wrapping layers and layers that shift and move, you just strap this on and go. Plus my lymphedema has now spread up to my shoulder, and this covers that. So someday soon I am hoping to feel well enough to get the process started. It would make things so much easier….
But meanwhile, we just keep wrapping. boxes and boxes of bandages come in the mail. It’s way more fun when flowers come in the mail….
I guess I should tell you about the latest with the cancer… we had hoped that one last test would show that my tumor was sensitive to some fancy superdrugs. No luck. I was so disappointed, Pulling the research study about that protocol that we had wanted so much out of my notebook and throwing it away made me cry for almost an hour.
Oh well. So here is the email i sent to family after I sort of calmed down
Chemobrain is real. There are significant intellectual deficits associated with chemotherapy, beyond what would be expected from the stress and fatigue. Sort of makes sense, when you think about it… so the temptation is there to blame all sorts of things on it, any forgetfulness or disorganization. However. I must be honest and admit that if any of those issues existed before chemo, I can’t blame them on chemo. Too bad.
Like my filing system. This is sort of circuitous, be patient with me (inability to stay on task when telling a story is DEFINITELY a problem…) But anyway, I keep my important recipes taped on the fronts of my kitchen cupboards. Or when I run out of space and can’t decide what to move, I use the insides too. Above is my bread machine bread recipe and pizza crust recipe. If I didn’t have chemo brain, I might be able to put the notes somewhere and find them later, or even memorize the recipe I use every. single. day. but you know, it’s there, just to the left of the sink, no problem.
I think this system drives certain family and friends absolutely crazy. They have some tolerance for people like me who clutter tables and over-fill bookcases, but I may be the only person they know with a clutter problem on VERTICAL surfaces.
And it’s not just recipes. If you’re at my house, and you NEED to know the text of the Magnificat right away, you can go over to the coffee maker, look straight ahead, and voila. No problem.
My mom gave me this. It was so special to me, and made me so happy that she sent me this treasure at a time when I really needed it, that I decided to forgo the tape and get out the hot glue gun. And yes, I do see the irony here, but she loves me anyway. But back to the story. Yesterday I was thinking of all these recipes after my sweet Sam texted me for my risotto recipe so that he could make a meal for his friends. As I was typing it all out to email him, i had another thought, a laugh out loud idea. You see, I am blessed to have more friends than anybody else I know. Really. And they all want more than anything to fix all this, and to take care of me and my family. Well, I have this one friend (who would NEVER clutter her vertical surfaces with taped on scraps of paper) and you know what would make her happier than anything? If I let her come over and take down all the papers, and then she would carefully copy them and make a perfect notebook for each of my children with this essential family data. Joy! (and after I confessed this to her she’s been texting me all day to make sure it happens It made me laugh to think of how each of my closest friends is SOOOOOOO different, that even the ways they help ME reflect their personalities. So my “make the loveliest ever homekeeping notebook” friend is Elizabeth Foss. But actually, she said she didn’t need to take everything down, if Brian sent a high resolution photo of each treasure, she would fix it all up. She respects my vertical clutter
She just gives and gives. Mostly she shares her children with me, one in particular has spent so many hours on skype with me that the skype people probably think he’s mine. What a gift that son has been to me! So we were talking about chemobrain. I honestly thought that my chemobrain would make it impossible to teach college level math ever again. But Elizabeth Foss had confidence in me, she gave me huge amounts of encouragement, and entrusted her son to my possibly-all-forgotten math skills. And we made it!!! What a gift, to share children and fix somebody’s self esteem at the same time…. Speaking of sharing children, I have got to tell you about my friend Kelle. Kelle’s gift is always, no matter what the time, day or night, being there for me to get me through the darkest hours. She’s a truly happy person, counting blessings and gifts even when life pretty much stinks. She lives Eucharisteo.
It also helps that we are totally on the same page in terms of our T21 club membership. But anyway, about sharing her children…. she knows my heart, and she knows what’s going to distract me when the nausea from my latest infusion or the pain from these ribs is more than i can bear. Sometimes it’s just listening, she would never minimize what I’m going through, but often when I need to collect myself to get through my day and be present for my children, I need some serious cheering up. And if I need cheering up, Kelle is there. Often ahead of time. So I suspect (although she won’t admit it) that she stocks up on the happiest, silliest videos and stories of her babies, so that she has one ready at 215 AM when I can’t sleep. (as much as she loves me, I am not going to ask her to wake her babies at 215 AM just because i am in a bad mood….)
Patti is another poor soul getting the late night calls, but she can do this because she lives three time zones away to the west… besides she has a new baby and a brand new grandbaby so she’s probably up anyway It works out great, my sister lives in England, so right when Patti is going to sleep, my sister is waking up, so there’s always somebody to talk to. Did you know that Patti’s WHOLE CHURCH is praying for me. No kidding. She texted me a photo of this big video screen during their service. They take the “where two or more are gathered” thing very seriously. OH! And she’s friends with Julia, doing the fundraiser, so that’s good too.
And Ginny, oh my goodness how I love Ginny. But I think it is possible that I have never, ever talked to her on the phone. I’m trying to remember. Dixon loves Ginny because she can manage her life without a smartphone. And even without a smartphone, she can somehow arrange miraculous disaster recovery adventures from 400 miles away. Like getting a boy to sleep away soccer camp at the last minute, The photo of Lark and me above is from when they drove through Charlotte to pick up my son to deliver him to Elizabeth Foss’s dad who got him to camp. Because I just couldn’t do it. I think of all my friends, Ginny’s parenting style is most like mine. Or at least most like I’d want to be even if I’m not quite there yet. Maybe I just want to go live at her house and read books on her sofa. She is that remarkable sort of friend you can be with and not have to say anything. Not that she can’t chat till 2 AM with the best of them, but when you’re around Ginny you really don’t have to.
Speaking of pictures, were you wondering where these pictures are coming from? My friends (and I don’t know who started it) made me a scrapbook a while back. They must have mailed it around from family to family, and it ended up on my doorstep the day before a big surgery, and I have cherished it every day since. Maybe it was Susanna who started it. All my friends are mamas. All my friends are amazing mamas. But nobody takes on the kind of mothering challenges that Susanna does. Go read her blog. Click over there, and down a little on the right edge, click on “the beginning of Katie’s story” … and even though there’s no way I can do the kind of mothering Susanna can, she loves me anyway… always there, steadfast and kind. Right now she’s in the hospital with two of her boys. I just don’t know how she does it all. But she does. With grace. Never arrogant or judgmental, EVER, though, which continues to amaze me, because you know those T shirts that say “what’s your superpower”??? Whoever designed those must be friends with Susanna.
Let’s see, who’s next in my love book? Esther. If you have ever read the comments, you know Esther. She doesn’t even have a blog. She isn’t on facebook. Of all these friends, I’ve known Esther the longest, fifteen years, maybe? I know I have photos from at least ten years ago. So I told you about my taping all my recipes on my cupboards, knowing that there are many wonderful mamas out there who have now lost all respect for me, such a failure as a housekeeper. And to even post photos of my vertical clutter! Well, I told Esther about it and she thought it was a BRILLIANT idea. I often think Esther and I were twins accidentally separated at birth. The only difference is that she’s often better at keeping up with my mom than I am…. and yes, that is a tatted rosary. No kidding. Guess that’s another difference… One of us got the talent and it wasn’t me
And the last pages in my love book are filled by Ann and her children. She had to bring her drawings and photos here to Charlotte to put them in, I think our other friends were nervous about mailing the book back and forth to Canada. Oh my goodness, the stories I could tell you about Ann! But I won’t, lest she turn right around and tell stories on me. Like the time when she and Emily and I met up at a women’s conference, and we were pretending to be secret service agents, sneaking her out the back door into my van until we ran into this big ditch…. or when she and Sam were filling the trash cans at Starbucks with packing peanuts with only moments to spare before we had to get her to the airport… Nope, no Ann stories from me. Although I heard a rumor that she told ten thousand women stories about me last weekend, and even took her boots off to show them her worn out tired prayer socks…. might should knit her a new pair some day… because I love her to the moon and back, and her children, too.
I’m not sure what this all has to do with chemobrain, actually. I probably had an idea about it when I started typing 1700 words ago. Sorry to ramble on so long…. thanks for listening. There were at least ten more things I was going to tell you about, but they will have to wait… like how the rest of my children are, and about this totally cool T shirt fundraiser at Suscipio, oh, and I do have friends who actually live in North Carolina, I need to tell you about them…. Tomorrow.
That was fast and easy. And you totally know how I needed SOMETHING to be fast and easy.
The biggest reason that it was easy was because of Rachel. Let me tell you about the BEST blessing for our family, this is such a good thing. Backing up a bit, we knew last spring that for obvious reasons, our time of homeschooling was ending, and we needed to be proactive and find the very best school-school situations for everyone. There is a wonderful public Montessori school just around the corner from our house, and even though they had never, ever had a child with Down Syndrome before, the principal and our first choice among the primary grades (ages 4 – 6) teachers were completely open to trying it out.
But this school is part of a huge public school system – more than 140,000 children. And those important administrator people who run the exceptional children’s department did their evaluations on George and decided he was so profoundly delayed that he would never succeed at Park Road Montessori School. They didn’t even think he was smart enough to function in a self contained classroom for kids with intellectual and behavioral disabilities in a different school. They thought he would be best off in a totally separate school for the very lowest functioning children. NOT!!! We had foiled their plans by carefully entering the magnet school lottery BEFORE having his disability evaluation, and there was nothing they could do. However, they were not shy in telling us that it wasn’t going to work, and set up all the paperwork so it would be easy to move him out as soon as he failed.
His teachers and principal need their own post (this one really was supposed to be about George’s ear surgery, sorry) but let me tell you about Rachel. Dixon and I, with the complete support of the school (who, again, have been TOTALLY supportive of George being part of their learning community) thought that maybe having a one-on-one support person for the first little bit of school might help his transition… obviously the school system wasn’t going to supply one, remember they didn’t want him to be there in the first place. Our amazing occupational therapist, Michelle Yoder found us an experienced OT assistant who wanted to work one more semester to save money for her masters program in OT… and she is George’s school coach. We thought for a long time about what her job title should be… not a shadow, that’s very passive, sounds like a really boring way to spend a day. Not his assistant… her role is not to assist him, but to facilitate HIM doing his own work, making his own transitions. So we call her his coach. And it is PERFECT. I promise, school stories and photos soon, he is thriving, developing, doing great. We were initially going to just have her with George for a few weeks…. but when we learned how grim my cancer situation really was, Dixon walked over to school and talked to everyone involved, and Rachel agreed to stay on with George for however long we needed her. It is SO wonderful to totally not have to worry about George at school at all. Rachel is there, she manages everything, all the communication with the school based therapists and special ed folks, everything. And since George really can’t tell us about his day, she sends home a VERY detailed report, every day, about what work he did, how things went, new things he learned…
Here is George after his preop Versed…. my floppy child was now drunk and REALLY floppy But anyway, when we found out that George would be having surgery today, since he wasn’t going to be in school, I asked Rachel to come help me so that Dixon could sleep, since he had to work last night and tonight. As you can see from the pictures, George was very happy to have Rachel there, and I was thrilled to not have to be the person who had to play fetch when he threw his new stuffed bear for the millionth time…
This really was going to be a short post, sorry. Back to George’s ears. The surgeon opened up his left ear drum, used this amazing operating microscope (sorry, they didn’t let me back there to take photos) got those little ossicles moving, and put in yet another permanent tube. He had not been hearing for several weeks on that side, so that should be lots better now. There was a tube sort of hanging out partially through his ear drum on the right, but when they did their tests under anesthesia, his ear drum didn’t vibrate at all,so they took out the old tube and basically did the same surgery on that side, and then made another new hole and put in another permanent tube. I can’t tell yet how much better his hearing is, we just got home and i have been busy typing here.
One more thing, though, then I need to give George my undivided attention, since the anesthesia leftovers seem to be wearing off. Thank you so much for all the love and support. All the comments and the emails and the facebook messages! And forty six people clicked over to Julia’s fundraiser http://covenantbuilders.blogspot.com/2013/09/be-drop-in-their-bucket.html … FORTY SIX people! From here to there. That just makes me so happy. And no results yet from all the scans yesterday, and that receptor test isn’t done yet either. Maybe Monday. I’ll let you know as soon as I learn anything. Meanwhile, keep praying. Nothing has changed from yesterday about how dismal this whole cancer thing is, but knowing that so many people are here loving and supporting my family…. makes it seem so much less grim, you know?