Monday, January 31, 2011
One of my favorite lines from the elderly Lady Grantham of Downton Abbey: "When something bad happens, instead of asking why, we need to minimize the damage." Or something to that effect.
For more awesome Lady Grantham lines, see this story.
This needs to be my war cry.
I feel like I've been complaining a lot lately--and I know I have a lot of reason and that it's totally normal to be discouraged and even a little depressed. But I'm tired of it. I'm ready to minimize the damage.
It's like these crazy neupogen shots. The chemo of course kills everything, and the neupogen stokes up my bone marrow. But lately the aching of my bones has become much, much worse. Like it hurts to stand up. Tylenol helps for about an hour or two, but then sometimes some of the chemo affects my liver and I can't take tylenol.
But you know what helps? A sweet friend dropped off a heated mattress pad. Oh it is heaven for these aching bones. Minimize the damage.
And you know what else helps? 2 more days of chemo this round--tomorrow and Friday, with neupogen shots every day until my white blood cell count gets to 5 (today was 0.7). There's an end in site. Just get the darn thing done with. Minimize the damage.
And Coke Slurpees. Oh I love them. Thank you Noelle for lighting the way. They settle my stomach and it's so much easier to eat cold icy than warm spicy. Minimize the damage.
Saturday, January 29, 2011
Sometimes at the end of the day all I have to show for myself is that it's one day over and that I get to go to bed. Ambien or ativan, take me away.
I've been a bit discouraged. I thought I knew what I was getting myself into with this repeated second round of chemo. And sure, the schedule has been the same, but I haven't had the same small surges of energy. I haven't felt any better; in fact, I've felt worse. Nausea, fatigue, lack of energy or desire to really do anything but nap and watch useless TV. I feel like a lump. I feel like the past three months have been a black hole--a waste of time and money. A LOT of money.
And that, I believe, is the problem. Unsubstantiated expectations. I didn't take into account that I started this second round tired already from the first half, with no break. My body feels like it's still breaking down; there has been no recovery and recouping time. So even with my excitement that on Tuesday my white blood cell count shot up from 0.2 to 3.4, I didn't expect it to drop by Friday back down to 0.4. And I thought my new blood would give me energy, but I think they gave me tired blood, because all I want to do is sleep. And NOT eat.
My only expectation is that there is an end of the day. An END.
But you know what comes with knowing there's an end of the day? That there's a new one coming. So even though I woke up at 5:00 am with a crushing sense of nausea due to yesterday's chemo, it also means it's one day closer to less nausea. Right? And one day closer to watching the last episode of Downton Abbey.
Image taken from here. Bali. One day I will travel again.
Wednesday, January 26, 2011
Last summer I visited my grandmother for a few days before and after a conference I had in Missouri in her neck of the woods. One day we bought a whole bunch of flowers and planted them in various pots and baskets all along her beautiful wrap-around porch. I still remember what joy I found in digging my hands into the soil and dirtying up my fingernails, in finding just the right spot for each pot or basket, and in watering those flowers, hoping they would thrive and provide my GranNomi with just the amount of color and life she needed in her rural hideaway. Every phone call throughout the summer would include the question: "How are the flowers doing?" Her response, every time, was that the red and white geraniums were blossoming the brightest and the best. Even with her extended time in Utah, and throughout the fall, those geraniums plugged along.
When I was diagnosed with leukemia in November, GranNomi emailed me every day. She sent me my dear Grandad's leather-bound hymnbook and sent me a hymn every day, hoping to strengthen my faith and hope. Oh how I felt both of them near me, from both sides of the veil. One day she emailed me with the news that those red and white geraniums were still blooming. And that she found great joy and blessing in the connection to her hope for my red and white blood cells.
Well my blood cell counts have risen and fallen dramatically with each injection of chemo and each neupogen shot. I've had a couple of crazy reactions to platelets and red blood cells, and then the neupogen shots, which boost my white blood cells, also cause my bones to ache. And oh how they ache. Two opposing powers.
Today I had another transfusion--two units of blood and platelets. I left for the hospital this morning at 7:30 (after yet another unfortunate barfing incident, this time safely in the bathroom!), and didn't get home until 4:30. It was a long day, with a LOT of Benadryl and steroids to prevent another reaction. So there was some good napping in there. Now my heart is pumping and my new blood is coursing through my veins. And I'm safely home, through the snow storm, watching American Idol.
Here's to hoping that my own bone marrow will start producing my own blood. And like those darn geraniums, blooming away, it will. Believe you me. Until then, I love that friends like Leslie donated blood today. Bless you.
Monday, January 24, 2011
All of you who know me, even a little bit, know that I'm LDS. My dissertation is based on Mormon women's history. I'm super active in my church and I talk about it and the people I associate with all the time. I love it. My membership and my beliefs make up a huge part of my identity and worldview.
Well, I've only been to little bits of church four times in the past three months. Understandably. I've been really sick, either in the hospital or home in bed. Or on the couch. Every week my home teachers have brought me the sacrament. I've maintained my calling as Relief Society president with the most active and loving counselors and committees. And dear ward members and others have literally flocked to my every need.
I didn't realize how much I missed the fellowship of the Saints. Sure, I've listened to my favorite Mormon Tabernacle choir and BYU choir cds on my ipod. Their hymn arrangements are incredible. I've read some pretty great talks from the internet, and I've even watched some on DVD and listened to podcasts. And of course I've prayed and read my scriptures.
It's just not the same as actually singing hymns with the congregation, or listening to a talk from the pulpit or participating in an actual Sunday School or Relief Society lesson, or praying together with a common cause and saying amen. Together.
Yesterday I braved the cold and the germs. I armed myself with hand sanitizer and anti-nausea pills. I made arrangements for the Sampson boys to save me a seat in the front, and I slipped in right as sacrament meeting started, surrounded/blockaded by my healthy roommates. I sang, I prayed, I partook, I listened. And then I slipped out as soon as the meeting was over. I was there.
But more importantly, I felt the fellowship of my fellow Saints. I winked and waved at dear friends across the pews. I saw babies who have grown considerably over the past months. I listened to talks about sharing the yoke of Christ. I watched the sacrament passed by new 12-year-old deacons that have received the priesthood since I've been there. I noted new members of the ward and thrilled at the idea of belonging. I saw my dear bishop and felt his love and concern, not just for me, as I've certainly felt over the past months, but for every member of the Crystal City Ward.
One day I'll be more regular. I'll stay for all three hours. For now it's baby steps, depending on how I feel and what my counts are. And regardless of strict attendance, I know I belong. But I rejoice in the opportunity for actual fellowship.
Saturday, January 22, 2011
Ever since 5 November, I have felt like my life and identity have been measured by numbers.
Every blood draw, every encounter with any medical professional has involved a count of white/red blood cells and platelets, blood pressure, temperature, weight. The nutritionist looks at my protein levels. My liver has been functioning at a high level, according to my CMB (complete metabolic blood). This week my white blood cell count went from 3.5 on Monday (normal is 4-10), to 0.5 on Wednesday, to 0.2 on Friday. That means I have like seriously 2 white blood cells dancing around my entire body to protect me from infection. And every single time my temperature is taken, I pray. Any slight rise means an infection and admittance to the hospital.
I have a medical records number and a blood bank number, and every time I get any medication, I have to give my birth date.
Every day, even, is a number. Each chemo course is scheduled by drug and by the number of the day in the course--so each day is measured by what day it is in the treatment cycle. Today is day 12 of course 2B. I'm in the second course of treatment; the sixth course lasts until 24 months from diagnosis.
This past week I had an appointment with my oncologist, and I asked what my recurrence risk is and what my percentage of fertility are. 40% and 30% respectively. I don't like these kinds of numbers. On Tuesday those numbers actually sent me spiraling first to the toilet to barf, then to bed. And there I stayed all week as that chemo did it's job. Physically, but also emotionally.
I'm so quantified.
Each day I have to remind myself that I am more than the numbers that quantify me. I have a mission in life! I have hope in my future! I believe in miracles! I have millions of friends--and my work in history has accorded me friends both living and dead!
How do you quantify courage? or faith? or love? You can't. It's just there or it isn't. And I get to decide.
As for that 30% number, I just have this to say:
Friday, January 21, 2011
I am so sorry. Your parking lot was the only available place--much better than poor dear Marni's car. I hope you can have compassion.
I'm so so so sorry. You were so sweet. Thank you.
Dear Lost Dog Cafe,
I still love your food. I just couldn't keep it down today.
I don't love you. I'm extremely happy to be done with you. You pretty much kill cancer (which is FINE by me) but you also kill the lining of my stomach. And it's not pretty. I know I will see another two weeks of you later in my next round (oh help), but I'm so so so glad to see you go for now. Peace out yo.
Wednesday, January 19, 2011
Last night we had to take a picture of our Relief Society presidency. It was due on 31 December as part of our auxiliary history to send to the annals of the Church in Salt Lake City (oh how I have come to love those annals on my previous monthly trips to do research/contract work). So we're a little late with the official portrait of our presidency. And a little unorthodox.
Only there's a lot you can't see in this picture. Beyond our classic Sunday attire (yes I'm in purple pjs with my green sweater) and the rest are in jeans and khakis and fuzzy socks--we do not dress like this for Sunday, I promise), you see our perfectly coiffed Relief Society hairstyles. No--this is solidarity, sisters. Everyone chose a hat from my hat rack.
But the thing about these women is this: they truly know the meaning behind lifting hanging hands and strengthening feeble knees. They have filled every Relief Society need while I've been literally flat in bed, as I have been the past three days. They have attended all meetings, visited the needy & downtrodden, fed the hungry, met the new move-ins, coordinated and invited and planned and carried out. I've experienced it firsthand in my absence, because they have done it for me, too: comforted, fed, visited, planned, coordinated for me. Literally yesterday as I hit an emotional and physical bottom, they lifted my hanging hands and strengthened my feeble knees.
So take that, Salt Lake City. Not your picture-perfect Relief Society presidency, but one that provides perfect relief.
Monday, January 17, 2011
Inspired by MLK's dream of hope, I choose to look past my headach-y, nauseated, nap-all-the-day-long, bitter cold outside. Here is what I'm dreaming of:
Nauvoo Relief Society Minutebook, chapter 1
Relief Society banners, chapter 5
Relief Society halls, chapter 4
My great-grandmother "Granna"--Hattie Esther Williamson Foster
Saturday, January 15, 2011
Thursday, January 13, 2011
Today I feel like I'm living the hokey pokey. I'm not sure why, but it's just what I thought of.
I think it's the up and down, pass it around. Oh wait--that's another song. I'm getting my songs mixed up. Chemo-brain, I tell you.
My white blood cell counts go up and down, all around. And I am left to wait. Until blood results come back. Wait until the oncologist decides if I should go ahead with the chemo for the day. Wait for the chemo to be mixed. Then wait for the shot. That's my life these days--the pokey (shot) in the hokey (the hospital).
Then come home, load up on anti-nausea drugs, nap, and watch Gilmore Girls reruns.
In the news: my blood work reveals that my liver is functioning high (does that mean overachieving? or working too hard?), which means no tylenol or herbal supplements, which is a slight problem with the cramps and headaches I've been getting with my chemo. Heated corn bags are awesome, and they keep me warm, but it's not the same. And because of kidney problems when I was first admitted to the hospital in November means no more Advil for the whole rest of my mortal life. So if you have any ideas about how to survive, just send them my way. And a crazy rash on my trunk, which is most assuredly NOT shingles (like one nurse who hadn't even seen me was sure I had). Thank goodness for the small things, right?
Shake it all around--that's what it's all about!
Tuesday, January 11, 2011
I must say that I feel like I'm surviving--nay, riding--on the wave of hope entirely built by dear friends and loved ones. Because I surely on my own could not press forward on my own accord.
Yesterday was spinal tap #2. It was fine--again, thank goodness for happy drugs and really sweet nurses. But once I got home and took into account that this is my life and that I really really really don't like the looks of my immediate future, and that I'm bald, let's just say it was a teary afternoon. I know what I'm getting myself into. And it's not pretty.
Today I had my long day of chemo, but after waiting for an hour to get my blood results, and seeing how low my white blood cell count has dropped and then waiting another hour for the oncologist to approve chemo, and then waiting an hour for the chemo to be mixed, and then six hours of chemo that makes me sick, I just don't know. At least I got steroids, which gives me an appetite for another two days.
Then I came home today and there in the mail was a lovely package. From Hope. Full of Hope: hope lives here. And hope only lives here, in my house, because of the incredibly hopeful people whose love surrounds me and fills me and gives me life right now when I can't seem to find it myself.
Like Marni, who sat with me all day long today, working away on her laptop. We rarely even talked--I mostly slept. But she was there. And because she was there I didn't lose it in my wait.
And Lauren, who brought over breakfast for dinner last night, and sat and listened to me, then bore her soul out to me and I recognized that other people have souls that have needs besides my own.
And Emily, who again sat with me yesterday all through my spinal tap experience, and fed me chicken nuggets and fries again while I lay flat on my back, and watched hours of HGTV with me in that tiny Intravenous Radiology room.
And Yvette, dear Yvette, who did my Sunday extremely scary laundry and the bathroom rug. Bless her heart. Heaps of blessings. And on that note, Krysta, who pulled her car over some weeks ago to let me throw up on the side of the road.
And Julie, Megan, and Rachel, who braved their own bouts of pneumonia to come over and dance outside my front door one frigid night (no germs inside!), just so I knew they can still shake their bodies. (and they can. They can.)
And Emily, who brought me bravery, and Stace and Jana and Amy who email me the most encouraging emails and don't expect replies, and Laurel who doubles her prayers, and all those who call and comment and fill me. I don't even know who they all are, but I know they are there, because this is really beyond and outside of me.
And those out-of-town visitors--Deb and Janiece and Jessica and my mom and my grandmother and my cousin and my sisters.
Sunday, January 09, 2011
Saturday, January 08, 2011
Question: when you're low on blood, where does it go? Does it just dissolve into your internal organs?
Unfortunately I had a little reaction about 20 minutes into the first unit: hives. Everywhere. Which called for a break and some extra benadryl and steroids. Sweet. Second unit went fine. Plus my chemo yesterday which requires steroids and ativan to prevent a reaction--let's just say there are a lot of steroids in my system.
Steroids on Jenny Reeder = rosy cheeks, rapid heart beat, a seriously huge appetite, and a lot of energy (relatively speaking!). It's a good thing, because I finished chemo round 2A on Friday and I start 2B--the exact repeat--on Monday. And this time I know exactly what I'm getting myself into: a couple of weeks of lack of appetite, some serious nausea, and daily headaches. Bring it on. Starting Monday with the spinal tap.
So seeing as today is Saturday, a special day, the day we get ready for Sunday, and the fact that I have new blood and a little bit of energy and white blood cells, I took full advantage. I did some yoga, I ran a few errands (got a new hat rack and some socks to cover my dangling PICC line on my arm), I went to lunch with Marni, I cleaned my bathroom, and I did some laundry. And I took a nap. And I'm exhausted.
But I think I'm ready. I hope.
Thursday, January 06, 2011
For the auction, you can donate items and/or bid on items and all of the proceeds will go to Jenny's paypal account. The auction will be held on February 14th from 9am EST to 10pm EST at http://welovejennyauction.
We're modeling the auction after the Bloggers Give Back Project, so check out their blog if you'd like an idea of what to expect.
If you'd like to donate an item for auction, check out the guidelines here.
Again, no pressure to participate! But we think it will be fun for those who decide to join us.
-The WLJ Team
so i'm now back home again....alas. very sad to leave miss jenny, but i'm posting once more because today there was reason to celebrate! though jenny was a little out of breath this morning as she and jessica took down her christmas tree, she got more blood results today and.....white blood cells are at 2.3 (woo hoo!) and she is not neutropenic any more! now she can really enjoy the lovely just bloomed lilies from randall.
she met with her doctor today--her oncologist who calls her his adorable patient--though never to her face. (i like him.) she will start her next round of chemo immediately (with spinal taps...eh.) and then it is one more month of crappy chemo and then on to more manageable rounds. woo hoo! forward and onward.
her heart has been racing a bit--unfortunately not for any good reasons. between that and the frequent losing her breath jenny will get more blood tomorrow. much better that way. the heart racing also means that jenny needs to drink more water! jenny is working her way through her gatorade stash.
and the nurse also reminded jenny (and all of us that get to see her) to use hand sanitizer again and again. and again.
jessica and i loved our time with jenny in the last week. LOVED. and if any of you have wondered about jenny's now bare head, we have to say that it is really quite perfect. i think very few of our pates would be quite so perfectly bald...or wear the very cute wig quite as well.
jenny drink your water!
Tuesday, January 04, 2011
hi again. today jenny and i went to the lovely infusion center at the virginia hospital center for jenny's chemo treatment. alas, before any sort of chemo treatment could begin jenny got her blood report. white blood cells were at 0.6 (aka almost absolutely nothing--down from 1.7 last week....eh) and neutrophils were at 0.3. not good. not good at all.
and then it took them 2 hours to decide whether or not she could get chemo. sitting around is a significant part of jenny's life now and sitting around and feeling crappy is not a fun combination.
so i went to the lost dog cafe to get sandwiches....and when i returned someone was....hmmm....perhaps a little spacey. somehow i missed the ativan dispersal. she eagerly ate her falcon sandwich (very good as was the turkey rueben) and really only spilled a little bit. but now it seems the several couple of hours are pretty fuzzy for jenny. she talked, she napped, and ate her whole sandwich. the elspar shot that generally burns her butt was diluted today and much more comfortable even though she had to be stuck twice because there was twice as much. (lamentably we have no photographic evidence of said shot.) then a bit more through her IV and jenny could head home.
it was quite miraculous we made it home since i had no idea how to get there. jenny somehow woke up just in time to tell me when to turn. (she no longer remembers any of this.) she went up the stairs and was gone for the rest of the afternoon. gone.
ativan makes everything better. especially dreams. but i won't talk about that...
regrettably jessica and i will head back west manana....and leave jenny to all of the wonderful people who are doing so much to help her. i'm glad we could be here for a few days, but i leave confident that she is well taken care of and i still hope to come back soon.
we love jennyreeder!
Monday, January 03, 2011
thanks to jenny i, janiece (the one who can't take a photo with her eyes open to save her life these days), get to contribute a bit tonight for the first time. jessica and i have been here since friday and we are loving our time with jenny. we had a fabulous low-key NYE with zpizza, virgina's lovely array of chips and dips, and jenny stayed up until midnight. saturday i attempted a re-creation of the liege waffles from bruges (only 5 million calories a piece). we all witnessed the wig's coming out day and jenny's beautiful lesson on sunday; and topped off sunday with jessica's fabulous island pork with coconut rice and a lovely group of friends. after a lot of organizing, the hospital for a shot, and a first-rate nap today, jenny felt good enough to go out. so we had dinner at the carlyle and jenny drove! it was jenny's first drive so i had to document a bit (to mauri's chagrin). jenny's neuropathy in her feet has subsided a bit and she chauffeured us to the carlyle brilliantly (that is without running into any stray roadsigns or people despite the temptation of points she would earn with a free-pass excuse). at the carlyle jenny had chicken palliard with roasted red peppers, mushrooms, angel hair pasta and this amazing brown butter sauce...mmm....even if she had to pick out the arugula. the wig lasted just until we got back into the car when she donned a much warmer scarf. and now we're capping off the night with the second half of north & south (the british one, not the civil war one).
we love jennyreeder!
p.s. if jenny looks a little shiney in the last photo this is not a side effect of the chemo....she was all lathered up with her super moisturizer.
And then she came to Relief Society. We were all so excited to have her there, because she is the president of this local church women's group, and we've missed her so! And we were even more excited that she was able to teach our lesson! She chose a beautiful theme from Psalms 46:10, "Be still, and know that I am God." Many in the group shared thoughts about turning off the noise in our lives to be able to have quiet times to reflect on our relationship with God. It was wonderful to hear some of Jenny's personal experiences with Leukemia and to see how it has given her time to be still and reflect on who God is and how he can help her in her life and with her struggles. She mentioned that she has especially learned how to ask God for specific blessings that can help her get through a treatment or a day.
One of the things I took from her lesson is that I tend to complain about my little struggles and I quite often let them get me down. Seeing Jenny talk so positively about her big struggles made me realize that I need to be more positive and use even my little struggles as ways to grow. This is why Jenny is our spiritual leader, to teach us these great things. We all look up to you! Jenny, thank you for teaching us this lesson and especially for teaching us with your life example!
Saturday, January 01, 2011
On the day when
The weight deadens
On your shoulders
And you stumble,
May the clay dance
To balance you.
And when your eyes
The gray window
And the ghost of loss gets in to you,
May a flock of colors,
Indigo, red, green,
and azure blue
Come to awaken in you
A meadow of delight.
When the canvas frays
In the curragh of thought
And a stain of ocean
Blackens beneath you,
May there come across the waters
A path of yellow moonlight
To bring you safely home.
May the nourishment of the earth be yours,
May the clarity of light be yours,
May the fluency of the ocean be yours,
May the protection of the ancestors be yours.
And so, may a slow
Wind work these words
Of love around you, an invisible cloak
To mind your life.
I feel this love and support and comfort, even on the days of my greatest ineptness and inability. I feel this cloak of love from you all cover my mind and my heart and I embrace it and wear it.
I rejoice in the small pleasures--today I wore jeans for the first time! I also took a 3-hour nap, one of those coma-hit-by-a-train naps where you can sense things are going on around you but you have no ability to participate in the present. And you enjoy it.
Plus Jessica and Janiece are here. Oh my. Dear friends fill my heart.
And, for the record, I totally survived Friday's chemo--the one I was really anxious about because of the anaphylactic reaction last time. This time was in the form of a shot with plenty of steroid and anti-nausea premeds. It sure burned going in, and the ativan totally snowed me, but I slept it off and am alive! No pictures of puffy red steroid cheeks.