Monday, July 18, 2011
Goodbye to the little sock covering it every day so the dangly didn't catch on everything or poke out.
Goodbye to weekly flushes and dressing changes.
Goodbye to sutures pulling on the skin of my arm.
Goodbye to three-minute showers with Glad Press 'n Seal and cloth medical tape (3 boxes!).
Goodbye to 3/4-length sleeves.
Goodbye to not being able to sleep on my left side without my heart going into flutters.
Goodbye to flinching anytime anyone grabbed my left arm.
Goodbye to not being able to lift weights and my lost guns.
Today I started my maintenance chemo--a 10-minute IV of vincristine once a month and a bunch of pills. (which means I'll have to get an IV once a month. and weekly blood draws where they now have to poke me.) Hooray!
Wednesday, July 06, 2011
This morning my oncologist used it to praise my blood counts. "Your labs are GORGEOUS!" he said, all in caps, with an explanation point. Higher than he even predicted. This little body is a fighter! Hooray!
He did say that I have 60-year-old bones, due to all the steroids and chemo that has pumped through my body. I'm to begin exercising. A lot. And drink a lot of milk. HOORAY! Who wants to go running tomorrow with a baldy with neuropathy in her feet? I may be slow but I'll be out there! (unless it is entirely too hot and humid. Sorry to disappoint.)
The plan is to start my maintenance phase in a week and a half. One IV-shot a month, with a blood draw, and then just pills! And my PICC line (affectionately known as Little Miss PICC-y) will come out after that first day! I only need to see my oncologist every three months! I told him I would miss him. But not too much.
On other fronts, as I drove to the hospital this morning I passed a man in his car with a parrot on his shoulder. Alas, no photo. I took a picture in my heart, though.
On another front, I just lit a match and it broke in half, the flaming end falling onto my skirt, before falling to the ground and burning out. Yes, it burned a hole through my skirt. The nerve! Who does that?!?
Tuesday, June 28, 2011
Remember my horrible rash last week? Well after days of no changes, my nurses sent me to a dermatologist. A mystery dermatologist. In McClean.
The mystery dermatologist took one look and said, "well it could be leukemia cutis," and immediately wanted to do a biopsy. The idea made me nervous--I had just been cross & matched for a transfusion; my platelets and white blood cell counts were VERY low and I worried about the risk of bleeding and infection.
But she didn't listen. And she didn't ask any other questions. She just dug out a piece of my neck and stitched me up. No other rash possible explanations, no consultation with my oncologist, no cream or anything to care for the rash.
Of course on the drive home I called Janiece, who looked up leukemia cutis while I drove. Not good. It's the spread of leukemia to the skin. Basically, it means the chemo isn't working, that I would need an immediate bone marrow transplant, and that my body is falling apart and has a very good possibility of not going back together.
Needless to say it's been a very uncomfortable week, fraught with anxiety and fear.
BUT as I pieced together things my oncologist had said to me in the past ("you are leukemia free;" "leukemia doesn't hide; it always shows up in the blood;" tri-weekly blood tests with no leukemia showing up; "the chemo is working"), and the lack of information from the dermatologist or from cancer websites, I worked to discern the words of the dermatologist.
And I prayed. A lot. As did my close friends. And I reached down deep. I remembered promises and blessings and all sorts of things. I realized previous answers to prayers. And I tried oh so hard not to let my fears carry me away. Even as the angry red bumps on my arms and neck came and went and came back and went.
Well today I have some great news. It's most definitely NOT leukemia cutis. I'm still waiting to hear what these bumps are--most likely a side effect from chemo.
So while I'm still a baldy, I have a whole life ahead of me.
Wednesday, June 22, 2011
So this week I thought I was back to normal--meaning I could go on walks and do a little exercise and work on my dissertation and my quilt. I so wanted to feel normal.
I got this super weird mystery rash last Wednesday night after Ward Council (was it because the meeting caused undue stress? Ask anyone else there...) that looks strangely like pimples on my arms and neck. My nurses have no clue what it is and after taking Benadryl for a week (does NOTHING but make me more tired), they decided I need to see a dermatologist. They kindly made me an appointment for today.
Then yesterday as I went in for my daily neupogin shot, I was informed that I'm severely anemic and that I need a transfusion. So not only do I have my pimply rash on my arms and neck, but a bright red cross-and-match transfusion wrist band. And my platelets went down from 350 to 22.
BUT the outpatient infusion center is too booked to schedule a transfusion for me today.
Let's just say yesterday was very frustrating. I'm tired of non-communicating medical professionals who make decisions about me without consulting ME. This is my deal and today I'm taking charge. Enough of the pimple-rash and how about we schedule a transfusion of 2 units of blood and platelets for Thursday? Just an idea. Then I can go to the Mormon Tabernacle Choir concert at Wolftrap tonight if I promise not to touch anyone or cut myself in the meanwhile. And wear sunblock (85 SPF) and a hat in this lovely 90 degree 100% humidity DC summer weather.
And thank you, Eliza, for your sweet thoughts--they were exactly what I needed to hear yesterday. And thank you dear Jill for sending them my way.
Sunday, June 05, 2011
I'm sorry. It's been a traumatic week, what with hair loss and all.
By Friday I knew... it was time to shave the noggin again. And I went through every single emotion from last time. Again. This time I armed myself with the following verses:
Are not two sparrows sold for a farthing? and one of them shall not fall on the ground without your Father.
But the very hairs of your head are all numbered.
Fear ye not therefore, for ye are of more value than many sparrows. (Matthew 10:29-31)
But there shall not an hair of your head perish.
In your patience, possess your souls. (Luke 21:18-19)
The soul shall be restored to the body, and the body to the soul; yea, and every limb and joint shall be restored to its body; yea, even a hair of the head shall not be lost; but all things shall be restored to their proper and perfect frame. (Alma 40:23)
And not one hair, neither mote, shall be lost, for it is the workmanship of mine hand. (D&C 29:25)
Stand fast in the work wherewith I have called you, and a hair of your head shall not be lost, and you shall be lifted up at the last day. (D&C 9:14)
Let him trust in me and he shall not be confounded; and a hair of his head shall not fall to the ground unnoticed. (D&C 84:116)
And this one:
Who shall change our vile body, that it may be refashioned like unto his glorious body, according to the working whereby he is able even to subdue all things unto himself. (Phil. 3:21)
This I believe--this unshaken faith and firm hope and conviction in a God who loves me and in a Savior whose resurrection means my body will one day be perfect. And not one hair will be lost down the drain or on my pillow. This.is.temporary.
The following pictures are not for the faint of heart... but are merely proof of the need to pull out the razor. Thank you Lindi for your mad skillz to clean up my head. Sorry--no after picture. Just know it's awesome. Clean and smooth!
I do love those curls. I hope it grows back in curly!
Wednesday, June 01, 2011
Darn that doxorubicin. It's taking its own sweet time to leave its imprint.
At least my curls hide the thinning and loss. So far. You MUST promise to tell me when it gets patchy and I need to wear a scarf.
And I just checked the side effects of the next two weeks' chemo: hair loss.
Well. At least I know it grows back.
Monday, May 30, 2011
Last week I sort of took a turn for the worst. I mean, my chemo caught up with me.
I was hoping I could run fast enough to stay out of its blasted reach!
I've had this awful, awful cough, all due to the fact that my body somehow has become this super-charged mucus-producing machine. Seriously, people. Come on, come all! See the cancer girl and her NOSE! The nurse said it is mucositis. Look it up your own self.
I overmedicated on Sudafed, Benadryl, Mucinex, cough medicine with codeine, cough drops. So I slept and slept and slept.
Then my absolute neutrophil count went into the toilet. Meaning I'm neutropenic--very few white blood cells. No more fresh fruits & veggies. And... daily neupogin shots.
And then... horror of horrors!
I got thrush. In my mouth.
My throat was raw and my mouth burned. I couldn't swallow very well. And my whole body ached from coughing. My stomach. Even my butt.
And then. My hair started falling out again. On my pillow in the morning. In the shower. Blast.
So, pumped up on antibiotics, I started feeling sorry for myself. Chemo is ripping my body apart. I just wanted to crawl into a hole and wait out the next four weeks.
But I didn't. I mean, I took naps and I slowed down considerably. And I pulled out some old quilt blocks from a quilt block exchange four years ago (I think. I can't do math with chemo brain). I had used many of the blocks I had originally received in two other quilts, but I had saved all the pink and brown ones. And it was time to put them together.
I had purchased extra fabrics to match some of the blocks (and boy, am I glad I did--this line has become obsolete!). So with the help of Katie, who figured out dimensions and made practice blocks, and Amy, who had this brilliant idea for my adjusted pattern, I got to work.
Repeat. Several times. In the cool of my basement, while all the world was at the pool for Memorial Day weekend. (I love the pool. I cannot go to the pool because of chemo and antibiotics. Don't be bitter; be better.)
I figured quilting is like my body on chemo. Cut apart. Put back together. Cut apart. Put back together. I can't wait to see my finished product(s).
Tuesday, May 24, 2011
Yesterday I bid farewell to my last dose of doxorubicin, the red poison.
Six doses over seven months
A quick push-infusion
You prevent cell division by binding to my DNA to prevent cancer replication
You kill my hair, you cause mouth sores, you make me oh so tired.
And you make me cough. A LOT. I can't stop.
Go in peace. And don't come back.
Here's to 17 more months of doxorubicin-free chemo treatments. And hair growing back. CURLY.
Sunday, May 22, 2011
But today I realized something. I've been pumped full of steroids, and while I don't like my puff face, or my huge appetite (all I can think about is FOOD!), or my weird sleeping patterns, and I have joked about wanting to use this opportunity to bulk my guns back up again (not a chance in all honesty), I have put my energy to use.
I have cleaned and organized (I wish you could see my room! my desk! my files!).
I have finished a conference paper and applied for a job.
I have monitored my blood work and tried to adjust my diet accordingly.
I have tracked bills.
I have caught up on some email (although I continue to have a mountain--and then people respond and I have even more!).
I have baked and visited people with baked goods.
I have planned how to finish a quilt started a couple of years ago.
I have gone on walks and worked in my garden.
And it feels so good. I feel like things are in order. I am where I need to be.
We'll see what this week brings!
Thursday, May 19, 2011
Namely that I'm in the middle of an intense round of chemo. Sitting in a recliner on Mondays for three hours being pumped full of red poison tends to make me feel sorry for myself. That and puffy steroid cheeks. And heartburn. And occasional digestive distress. And worrying about blood levels. And upcoming shots that will kick my stomach lining. And bones.
I turned a corner. I made an important realization:
I have a birthday to celebrate. (yes, I feel like I've aged 20 years in the last year!)
I have a future. (with only 6 1/2 weeks of intense chemo left!)
There is hope. (and I have SO much I want to do!)
This morning I woke up and went on a walk, drinking in the misty humid spring day with all the green and flowers around my neighborhood: peonies! a few lingering azaeleas! columbine! begonias! impatience! I've been working on my own little garden, too. Yesterday I finally planted my bean hyacinth seeds--I can't wait for them to overtake my back fence, winding their tendrils through the ivy and bursting purple and proud.
Then I had a reflexology massage. New-age-y, right? Well, I am in mid-life! It was delightful. And perfect. And it soothed my tingling neuropathy feet and reminded me that I am alive! I need to care for this crazy body and remind it good it has been to me.
Then I went shopping! I'm in a baking mood, so first some mini-loaf pans. Then some 3/4-length shirts--no short sleeves for me this summer with my PICC line. Great colors! Comfy and fun!
Now I think I'll go take me a nap. Rest up. I've got a big year ahead. Just you wait.
Monday, May 09, 2011
Because I've felt relatively good over the last few weeks, and have ached for independence, I didn't ask anyone to give me a ride.
But on Sunday night my uncle, who's in town for the weekend with his wife at my cousin's house, and who can't stand to be alone himself, asked if he could come with me.
And then I realized... I was scared and a tiny bit discouraged and daunted at the start of a new round that may very well kick my butt.
So he came. and just sat there for two hours while I got pumped up with vincristine and danurubicin. And some serious steroids and zofran. We both mostly just worked away, reading the Post and working on our laptops. But just having him there with me meant the world. I wish I had a picture of the two of us.
Then I went and got the chest x-ray I was supposed to get last Friday. I have a nasty cough from my allergies that just sits there and worries me about bronchitis or infected fluid in my lungs. I guess chemo makes you a bit more susceptible. At any rate, I knew I had Diedra's wedding on Saturday and a crazy busy important day at church on Sunday, and I was so afraid they would want to admit me. So I took my cough medicine with codeine, did my nasal rinse, and prayed and prayed. And went in today. The tech had the radiologist send the results to my doctor, and I haven't heard anything from him, so... no news is good news, right?!? But Steve was there with me.
And I received such sweet texts of concern and offers to come with me today. I'm so grateful for my friends--and even a perfect stranger at church today who offered to come with and actually brought me chicken enchiladas and strawberry shortcake tonight. And we're backyard neighbors so we can be friends.
And tonight when I was just entering the "feeling sorry for myself" stage, I went on a walk with Marni, Lindi, and Noelle. It was just enough to keep my neuropathy feet moving and lungs burning and emotions at bay. How I love these women.
Friday, May 06, 2011
And then I saw my old, trusty friend, the razor. I was told at the beginning of my cancer adventure I couldn't use a razor because of the danger of cutting myself (what am I, in 7th grade?). Friends, let me just tell you, if you didn't already know, that electric razors do not shave your legs well. At all. I've had stubbly legs since November, except for the time when I lost all hair on my legs. Stubbly hair isn't fun, especially when the weather is getting warmer and you have a wedding tomorrow.
So I defied them. I shaved. Long, delicious strokes, every single hair coming off. Oh boy do my legs feel smooth! Oh there is nothing like it!
It makes up for the stranger who the other day said to me, "Wow! You are brave to cut your hair that short! I would never dare do that!" To which I responded, "It's called chemo" and promptly started crying. She just turned around and walked away. I'll show you, too!
Monday, May 02, 2011
These allergies are kicking my trash! I had no idea I could blow my nose so many times in one day. I'm doing everything I can think of--sinus rinses a couple of times a day, saline spray ALL the time, allegra-d, mucinex, robitussen. I just don't want my persistent post-nasal cough to aggravate my lungs and turn into some kind of bronchitis, putting off my chemo.
Tuesday, April 26, 2011
Sunday, April 17, 2011
Friday, April 08, 2011
Tuesday, April 05, 2011
Yesterday I lost my filter. I blame it on chemo.
I went to a Look Good Feel Better workshop at the Cancer Resource Center at the hospital. It's a great program aimed to help women with cancer literally look good and feel better. They give you a makeup demonstration and free makeup and they show different ways to wear wigs and scarves. There was a lot of helpful information and they even had sheet cake for a 20-year anniversary celebration. I couldn't bear the thought of that much sugar and frosting, but it was a nice effort.
I think I was the youngest of the six cancer women there by at least 30 years. That, for some reason, made me feel a little feisty. And--I'll be honest--a little vulnerable and defensive that these are my peers. That I'm here, learning how to paint on eyebrows, especially when my eyebrows didn't fall out (for which I am eternally grateful). I didn't want to talk about hair falling out (mine obviously already has) or nausea (mine will return next month) or any of the discomforts of my life.
Then they showed us some creative head coverings--one with a pair of tights placed on your head and the legs wrapped around like a turban. My immediate thought was something along the lines of fear and discomfort at the thought of putting the crotch of a pair of tights on my head. My head is pretty vulnerable and I'm pretty particular about what touches what. Hey--I have cancer.
The lady kept talking about how she buys all this great stuff at thrift stores, including ratty wigs, shoulder pads, and tights. Now, don't get me wrong, I LOVE a good thrift store when I'm at my ultimate health, even then, with a big can of Lysol. But then when she told me if I wanted to try a pair of her cute tights-turban wig, my reaction?
"Uh, no. I don't really want a stranger's crotch on my head."
She looked at me, completely baffled, and said, "oh."
Why, oh why couldn't I just say "no, thank you"? I blame it on chemo killing my filter.
Monday, March 28, 2011
Thursday, March 24, 2011
That's right. It's Thursday. And I'm NOT at Interventional Radiology at the hospital getting another spinal tap. Wahoo! To celebrate, sweet Laurel sent flowers.
I feel like I'm still recovering from the weekend. Yesterday I had cravings for random foods: pastries, hot dogs, mangoes, ice cream, and Tex Mex. I satisfied with some Baskin Robbins (thanks Sarah!), a kiwi mango ice pop at Dairy Godmother (oh YUM!), and some Baja Fresh (in that order). Still working through the headaches.
Yesterday a friend of my roommate Virginia offered the services of her housecleaner. She was here for four hours yesterday. WOW. I feel really really clean. It's amazing how you can consider yourself a clean person, and then cancer kicks your trash, and a few months pass, and then someone comes in and takes charge. It's awesome.
Monday, March 21, 2011
And I'm back in the land of the living...
After a few days where I felt like I was in the Valley of the Shadow, I woke up this morning and actually brushed my teeth and went downstairs to eat breakfast. And I saw spring outside my window. The neighbors' tree suddenly burst into bloom sometime within the past four bed-ridden days.
Signs that you feel better:
- You can brush your teeth without throwing up
- You shower and put on a little bit of make up, even if you wear sweats and go back to bed
- You eat at a table instead of in bed
- You transition from Pedialite to Gatorade (Virginia made me choose between drinking Pedialite or going to the ER after I didn't eat or drink for 2 days. It tastes slightly better than children's cough medicine and is much better when diluted with water)
- You think about responding to emails again... and blogging!
Maybe tomorrow I'll feel good enough to go on a walk around the block. Or make my bed. Or send some more emails. Maybe I'll be even better at managing my new headaches (it's much lower now and kind of in my ears in a weird way). But I'll figure it out. And if not, I'll just lay in bed and watch HGTV on my new digital converter. Ahhhhh...
P.S. Thank goodness for March Madness basketball, the greatest distraction of all...
Thursday, March 17, 2011
"Well, back in November I was diagnosed with leukemia," I said, not able to look her in the face. "In fact, tomorrow I have a spinal tap."
"Oh, everything will come back clear. It's going to be fine." It was nice of her, but I think she really just didn't know what to say.
Meanwhile I walked to my car and cried. Of course I look different. I'm bald (well with slowly growing hair). I don't have that spring in my stop--I move quite slowly so I don't fall down. I'm slow. My life is completely different.
I was buying ingredients to make cookies for the cute nurses and dr giving me my last spinal tap today. I haven't baked since before. It took forever and ever. Cute LuAnn came to visit and helped with the last part. Thank goodness.
Last night I heard the disappointing news that my dear friend Laurel couldn't make it--a security breech and the Salt Lake City Airport prevented her from making a connection in Chicago and making it to DC to hang out with me for this last spinal tap. I had been overwhelmed with her desire and love and devotion to support me.
Thank goodness, Terry picked up and picked me up and sat with me and carried my cookies. It was another throw-upy day. I had Terry pull over twice, and I think twice I still ended up throwing up in her car (I learned my lesson with an empty plastic bag!). Even while throwing up at the hospital, Terry switched out my barf bins and found me a washcloth. The silly thing was that there was just nothing to throw up! They loaded me up with some serious ativan and fentonyl and I don't remember anything after that, between the spinal tap and restitching my PICC line suture.
I do remember waking up when the Dr. Washington came in to say that my spinal fluid had abnormal amounts of white blood cells. It could be an infection, or it could be from poking me so often, week after week.
And I came home and slept and slept and barfed and slept. No wonder I look different!
Tuesday, March 15, 2011
A dear friend Jill shared this quote with me recently from another dear old friend, Eliza R. Snow:
It is a blessing to us that we, at times, are brought into circumstances which are calculated to bring into exercise every power and faculty which we possess. It is true, it may not seem very desirable for the time being, but it has a tendency to strengthen and develop our abilities and prepare us for greater usefulness.
Minutes of the 28th Meeting and First Annual Meeting
of the Female Relief Society of the 17th Ward, S.L. City
Deseret News Weekly, 14 April 1869, p. 117
I love that. I feel like my experience right now brings into exercise every power and faculty I possess. Even my stomach muscles when I barf while driving. After this, I probably should have a six-pack.
Today when I had my PICC line dressing changed, the nurse noticed that one of the stitches holding it into my arm had come out (um, excuse me, how does that just come out? what happened to the part of my arm it was stitched to? where is it?), so I have to get the stitch replaced when I have my spinal tap on Thursday. My last spinal tap, if you were wondering. They just said to be careful that my PICC line doesn't come out. Can you imagine? This little tube that goes all the way up my arm all the way to my heart, just slipping out of my arm? SCARY! So I'm also exercising my arm power to keep that baby in.
Do you know what other power I'm exercising? My faith and hope. Faith in a much higher divine power. Hope in that divine power to carry me through this and beyond, to a life full of love and work and rest and peace.
And as Eliza says, this present life sure doesn't seem desirable a LOT of the time, but if I can strengthen all these weak parts of me, just you wait. Just you wait...
Sunday, March 13, 2011
Say you have a horrible headache and you hold out at church as long as you can, but then just before Sunday School starts, you decide to go home before you burst into tears. What do you do if you're driving down King Street and you suddenly have to throw up? There is literally nowhere to pull over, and even if you did, you're the driver and you'd be opening your door and throwing up into traffic. Or some random driveway. The only alternative I could think of was to keep driving... and so I just threw up into my skirt. I cried. I laughed. I mean, what else do you do with the ridiculousness of your life?
I think this was 2 weeks ago...
The exciting news is... it's GROWING! Like spring! right?
Friday, March 11, 2011
I love my doctor and nurses. I've become acquainted with everyone down there in interventional radiology. While I was in the waiting room yesterday morning (at o'dark thirty), a nurse whose name I don't know walked in and said, "Oh, Jenny! I was just thinking about you yesterday!" And my regular nurse, Tina, told me that no one has the same doctor every week, but Dr. Washington requests me every week. He always comes in early to see how much my hair has grown. Yesterday as I walked out, he said he can't wait to see my afro next week, with a pick stuck in it and everything. Then again, he also told me to dress like Sonny D for my last spinal tap. Any suggestions?
I came home, all ready to lay flat on my back and veg with my beloved HGTV. Unfortunately, my roommate forgot to tell me that starting yesterday, my TV needs a special digital box. That little surprise sort of threw me. I ended up watching some stuff on my lap top on my stomach, but then I got all hot and felt like I was getting a fever, and then I just got depressed that I need my TV because this is my life. I am so not a TV person. And yet I need my TV. Surprise!
I finally decided to take an ambien and go to bed. Sometimes it's just better to start over fresh, you know?
Coming up: Jenny bares her head and shows the growing hair on her noggin. Aren't you excited?!? It's DARK... surprise!
Wednesday, March 09, 2011
The other day a dear friend emailed me with the hope that I forget the discomfort and headache of my cancer experience. I had never thought of that.
There's so much I want to remember: the love and support of so many dear friends and family.
And yet there's so much I want to forget. Like yesterday when I had such a raging headache that as I bent over to sort laundry on the floor of my closet, I ended up sitting on a pile of dirty clothes, leaning back against my Ikea dresser, crying because I was in a tailspin and I didn't think I could continue.
What do you choose to remember? What memories do you hold on to, that define you? What do you gladly forget?
Good news: with my headaches--I can switch off throughout the day between ibuprofen and acetaminophen. That TOTALLY cuts the pain.
I must say: one of my favorite memories of living with D'Arcy was a fall Sunday afternoon photo shoot we did in Central Park. So much fun.
Monday, March 07, 2011
Last night I thought I'd just sleep through my headache. Not so. I was in and out of sleep for a couple of hours, and every time I moved my body, the pain in my head sort of reverberated in waves throughout my body. So around 3 am, I forced myself up (knowing the movement would be more tailspin) to take some stronger Tylenol.
When I woke up this morning, I did not want to get out of bed. Or move. I was afraid to, actually. I thought I might just stay in bed all day. After all, I may have overdone it yesterday with three full hours plus of church yesterday as well as another Relief Society visit in the evening. I was pretty ok with reading my new favorite book (The Hiding Place--I swear I read it years ago but I do not remember anything. And I love it. LOVE it.).
Let me just say a couple of things got me out of bed this morning:
- A sweet email from Sara, who wanted to come visit later. We had a GREAT walk in the sun (and fully loaded on Tylenol).
- A phone call from my oncologist's billing office. After filling out a bunch of forms and providing them with information about my awesome current financial status, they decided to overwrite my entire bill. I owe them $0! Oh my gosh! I told Vanessa on the phone (we've become friends over the months) that she just gave me a reason to get out of bed. She said, "You get out of bed, girl! You gotta celebrate!" Now... if my other peeps and providers can be as generous...
- Lunch with Jen, my fellow PICC-line day-club friend. Her visit got me in the shower and made my bed AND emptied the dishwasher. We had salad and sandwiches. And a great visit.
- A phone call from Jana Banana Cherry Hairy Pitts, one of my dearest junior high/high school friends. Oh she makes me laugh.
Saturday, March 05, 2011
When a thing is wick, it has a life about it...
Somewhere there's a single streak of green inside it...
This morning Virginia and I tackled the jungle of our little back patio. We laughed to think about the two invalids of the house outside, pulling and tugging and raking. She's had a sinus infection all week and I, of course, am cancer girl (don't worry--we quarantined each other during her infectious phase. We don't share germs.). It was cloudy but about 50 degrees, so we put on our gardening clothes, found some gloves and garbage bags, and went to work.
When a thing is wick, it has a light about it
Maybe not a light that you can see.
But hiding down below a spark's asleep inside it,
Waiting for the right time to be seen.
I felt responsible for the out-of-control bean hyacinth vines that had taken over two fences. My dear grandmother sends me seeds from her garden every year, and I plant the little wrinkly black and white seeds along the back fence. This year they really took off and crowded out the entire back fence, even crawling up into the low-hanging limbs of the neighbor's apple tree. I loved those delicate purple blossoms. I love the deep green color and the wild life they filled my patio with last summer. And then I let their vines wither and die this fall and winter while my blood freaked out and created its very own lymphoblasts, slowly destroying everything in its path.
Well, the lymphoblasts are gone, and it was time for those darn dead vines to come down. I took to them with a vengeance (until I had to sit down and take a little breather), but down they came. Clean. Free. Gone.
Virginia attacked the flower beds and found growing tulips and hyacinths underneath all the leaves and vines and dead flowers from last season. I found a dead mum in a pot, and right as I started pulling it out, I found a little streak of green. Something was growing down in there, and it wasn't a weed. It was growing out of the old dead stalks. I didn't have the heart to uproot it, so I carefully cut off the dead stuff and put the pot in the sun, where it could grow to its heart's content.
It felt so good to be out there in the fresh air, working my hands and getting dirty. Oh I can't tell you. But I can tell you, spring is coming. It's a little deep in the ground this morning--the gray skies threaten to rain all day tomorrow. But it's a warmer breeze. It's coming. And it's bringing life and hope.
You clear away the dead parts,
So the tender buds can form,
Loosen up the earth,
And let the roots get warm.
Friday, March 04, 2011
That's what I did yesterday. Spinal tap number 5. Two more to go.
And I didn't even cry until after I got home, took a nap, and talked to a lady on the phone from the hospital who called, concerned that I am running up a huge medical bill and my insurance has stopped covering me. In. Out. In. Out. I'm alive. I'm ok. I'll figure this out.
I took down her address and mailed a letter this morning with a formal request for financial assistance (which I thought I'd done in November).
In. Out. We're alive. It's ok.
Tuesday, March 01, 2011
I'd begun to wonder over the past few days. I feel like my brain can't wrap around life very well. I haven't dealt with life's normal little glitches, not to mention the trauma and anxiety of weekly spinal taps, mounting medical bills, and just dealing emotionally and mentally with cancer. One crazy thought was that leukemia had spread. It hasn't! Don't worry about that any more!
Another small victory: as I drove into the parking garage to park for my appointment, a woman pulled out without looking and hit my car. Awesome. It's just a small dent in the bumper, but the thought of dealing with such business almost freaked me out. The good news is that it DIDN'T. I didn't get upset. I didn't cry. I'm not going crazy. Don't worry. I already took care of the details with my car insurance.
Now... if only Geico could give Aetna some pointers on customer service. Yesterday my health insurance claims rep was so confusing and ridiculous on the phone--she told me I shouldn't worry so much about all these random details, like multiple Explanations of Benefits for the same services, or trying to figure out separate occurrences, requiring a new diagnosis and new claims, or that I don't need to put together a spread sheet to keep track of all the claims and actual bills. Now that is all so over my poor, confused, chemo-brain-headachy head.
Friday, February 25, 2011
Yes, I admit it, I cried. It didn't even hurt--thanks to beautiful modern drugs. It was the whole situation that brought me to tears. The thought of laying face down on a skinny table, and that I'm going to have to do it again and again and again. (but that's all. three more times!) And knowing that my back would be oh-so-sore for another week and that I would lay at home alone on my back. It's sort of funny that the discharge instructions after an intrathecal chemo injection tell you to drink 8 oz. of water every hour, which means you have to get up and go to the bathroom every 20 minutes. Not comfortable.
But you know what? Those nurses, my two at interventional radiology, Mary and Tina, they kept me in that room and hugged me and shared an orange with me and made me laugh. And Tina came in and hugged me every time she came to check on me. And Mary called me today to make sure I was doing ok.
But the best? Julie Brady came over last night and danced my troubles away. After Virginia's frantic call ("I think Jenny needs you to come over tonight" which is code for "I don't know how to help Jenny stop crying"), Julie marched into my room, wearing her paint sweats, her awesome hair in three tiny pigtails, and danced. And I laughed my head off and all my troubles melted away.
Wednesday, February 23, 2011
And I say, it's all right!
I'm trying to see how many blog posts I can title after songs about sunshine. I have this fascination with the sun. I love the sun! Perhaps it comes from a few years in a basement bedroom with no windows. Now of course I absolutely LOVE the two windows in my bedroom, upon which I hung my most sheer Ikea curtains that let in as much light as possible.
Today Marni and I took a beautiful sunny though chilly walk. We went much further than I've gone in the past. I think that means I'm getting stronger. With a little more energy. Yahoo! Bring on the marathons! (Not really. Please no. Not now. Maybe later.)
Of course just as I feel like my back is recovering from last week's spinal tap, I go again tomorrow morning. I like to think I am going to get this stuff down. At least I'll be friends with all the people at interventional radiology! (especially the ones with the happy drugs)
I decided this morning that even when we don't have control over what's happening to our bodies, we always have some kind of control over the way we care for our bodies. I believe that we have been given a custodianship over our bodies in this life--and regardless of the disease or accident that may befall us, we have a responsibility to care and feed and rest and water these bodies. I am convinced that even with poisonous chemo running through my veins (and spinal sac!), I can eat the proper foods to provide my crazy body with appropriate nutrients, that it may heal and grow proper cells and blood and serve me throughout all my years.
I need this little body. I've got miles to go and I need to make sure I get there intact! Or at least taped together.
Monday, February 21, 2011
I think I may have overdone it yesterday, with two whole hours of church (mind you, I had to be on task with the New Move-in class AND conducting Relief Society), a Relief Society presidency meeting, the home teachers coming, and such. But I just felt so good and capable and I handled it all very well.
But this morning when I woke up to gray and the promise of rain, I just wanted to stay in bed. My body wanted to stay in bed. So that's where I am.
Don't worry--every lamp in my room is on and it's bright as sunlight in here.
And double don't worry--I'm about to put in a movie and actually work on my ever-mounting email inbox. After a snack. and maybe a nap. and maybe some girl scout cookies from the Maxwells.
Saturday, February 19, 2011
This past week on Thursday I started my third round of chemo--it's called Maintenance and Prophylaxis. First spinal tap: done. It's the third I've had in this cancer experience, and while I must say it's never as bad as it sounds, I became pretty anxious about it the night before. I happened last time, about six weeks ago, to see the needle as I waited for the doctor and nurse to confirm the dose of chem with the pharmacy. That's a picture that I can't get out of my head. I also have to say they have pretty incredible nurses who are so sweet and so positive and give me the best happy drugs. PHEW for happy drugs. And the doctor who administered the chemo into my spinal sac was FAST. Yeah for fast spinal taps.
And this week I put together a spread sheet of all my bills and insurance claims. Holy cow. This stuff is crazy expensive. CRAZY. I got an itemized bill from the hospital for my care from Dec. 14 to the present, which is pretty much all outpatient infusion stuff, and it is CRAZY. The only thing I can do is practice my Excel spreadsheet skills (I'm a historian. I have very little spreadsheet skills) and try to organize my information. Because if you don't know your information, you can't figure out what you're going to do with it, right?!
One thing at a time. One day at a time. I love how D. Todd Christofferson talks about how in the wilderness the Israelites received their manna one day at a time. It is enough.
Wednesday, February 16, 2011
And oh boy, do I feel the love. It fills me, straightens my bending, strengthens my weary bones, and fuels my exhaustion. I feel the support and find purpose outside of my bed.
So a few acknowledgments are in order:
To those who donated for the auction--you are amazing. You demonstrate your skills and talents and the ability to create and make the world beautiful. I love how every item up for bidding was so individual to your abilities, from Dutch oven dinners to quilts to babysitting and math tutoring. I realize that we all have a contribution to make and we all need to rely on each other because individually we can't do it all on our own.
To those who bid--you are generous. Beyond generous. I want to be like you. I want to learn to dig deep and spread what I have to help others. To those of you who outbid each other, you are funny. Stay friends, though, ok? Don't be bitter, be better. To those who won, congrats! I hope your winnings are everything you wanted them to be and I hope you always remember the love and gratitude I have for you. To those who didn't win, again, don't be bitter, be better. Thank you for raising the stakes. You have boosted me in many ways. I love you.
To those who advertised on Facebook and blogs, thank you for spreading the word. I don't know many of the people who participated, but I feel like I found a whole bunch of new friends. Thank you.
To those who donated directly into the Paypal account, thank you. Thank you from the bottom of my heart. You all are helping me to realize that I can get through this, that I can figure out how to manage it all, and that I will beat cancer.
To Emily who coordinated this all, your quiet service and love and support are incredible and I will always appreciate this. Thank you for sharing your time and hard work.
But most of all, to all of you, far and wide, I have learned something that will stay with me the whole rest of my long life. Marjorie Hinckley once said, "Oh, how we need each other." Thank you for being here for me in this crazy experience. I will be here for you.
In other news, I have a spinal tap tomorrow morning. The first of five weekly chemo jabs into my spinal fluid. Think happy thoughts for me!
Sunday, February 13, 2011
So tomorrow is Valentine's Day.
I used to dread it--I had these crazy ridiculous expectations and I didn't realize that I could choose-my-own-adventure on Valentine's Day.
But this year--and this past week in particular--I've realized that even in the worst of circumstances, we can still choose.
And I choose to shout out to a few things that I have come to love:
- I love all you dear folks who have so generously donated items and services to the We Love Jenny Auction. It's been really weird and surreal to be on this end of such a venture. I have been amazed at the ingenuity and creativity of the talents of friends and people I don't even know. There is some amazing stuff, here. Check it out!
- I had no idea when I chose to come to George Mason University for my PhD that I would end up in the most supportive history department in the country. On Friday my adviser visited me in my home with a valentine from the faculty of the department. She and I both cried at the generosity of such wonderful people. Thank you for the financial and the intellectual contribution. And for those of you in the department who asked and wondered, yes, oh yes, I will be back. And you will never regret the decisions to admit me to the program, but to continue me in the program. Mark my word.
- I value the ability to work. In our house, each roommate takes a weekly turn to clean. I have been relieved of the duty since oh, October, and I'm so grateful to live with clean roommates. Yesterday I cleaned the kitchen. It took me a really long time and I had to take a few breaks and a little nap after, but it's anti-bacterially sound and I feel like I can contribute. And it felt good.
- After a tiring week--I literally stayed in my house from after Tuesday's appointment through Friday--I ventured out. On my own. I drove to the pharmacy and to Target. And then I came home and took a nap. But there is something about being independent and driving around, something liberating, even if it is only to Target and the pharmacy. And it was sunny. And I loved it.
- I love modern medicine. Even though it often makes me sick--it also makes me sleep and eases my pain and--I believe, deep down--it will make me better. You just watch out.
Thursday, February 10, 2011
I got up, let in the plumber to look at our rusty sink (he had to make a special order so he didn't stay long), and then crawled right back into bed. And stayed there. Until I had already cried my eyes out because my body STILL hurts from chemo last Friday and I knew it was time to take matters into my own hands.
Yesterday I felt like I had ADD. I have a million different things started and I just can't finish anything. A sewing project that looks like a first-grader made it, piles of laundry, piles of stuff, even an unfinished box of Skittles. I just felt unfinished. My bones hurt, reminding me that my chemo, though finished for round 2, is not in fact finished. And that darn nausea resurfaced last night. Grrrrr.....
So I dragged my tired bones downstairs, had some lunch, did some laundry, and didn't even think about really doing anything else except to watch HGTV and Gilmore Girls and read my latest book, Listening is an Act of Love. It's a collection of Storycorps stories of just run-of-the-mill Americans. And I cried my eyes out again. Life is tough for a lot of people. Stories of how other people have made it work in light of tremendous odds sort of filled me. And finished me.
Finished me in the sense that I realized this one point: I need to take care of myself. I need to be gentle with me. I need to allow for the unfinishing and finishing and be patient. I need to relinquish the expectations I have and recognize the moment. Finishing requires a lifetime and more. And that recognition means taking things slowly, pressing through, finding completion in the small things, like a load of laundry or a meal staying down.
I loved waking up this morning feeling entirely different. I knew in my bones that it was going to be a better day. I let in the stove-fixer guy and didn't go back to bed. I made a list that I know is going to take me months to finish. And I've finished 2 things on there, working on more. And I'll take some breaks and maybe a nap.
And try again tomorrow.
Tuesday, February 08, 2011
- You make your bed.
- You can drive yourself to your appointment. Even if you have to park on the third floor of the parking garage with no elevator and walking up and down those stairs wears you out a little bit. You did it!
- You go to the hospital to get your PICC line dressing changed and blood drawn, and while the line flushes, no blood comes out. Just when you begin to panic a little that the leukemia is back and has sucked all your blood, the nurse decides to try a clot buster, and after a half-hour flush, the blood comes out just fine. PHEW!
- You have a cheeseburger at the Carlyle for lunch with Sheila! Delish!
- You take a two-hour nap.
- You haven't taken any anti-nausea meds so far today.
Monday, February 07, 2011
Sunday wig shot...
And in other news, what a wonderful weekend with Debbie in town. We were quite the sight--she's six months pregnant and I'm bald and sort of a hot mess. And she was the best thing that happened to me this weekend--she cleaned my bathroom, organized files, helped with laundry and errands, and made me laugh. Oh how I love her.
Thursday, February 03, 2011
Good news: my white blood cell count went from 0.3 on Monday to 6 yesterday! Which means no neupogen shot today! No more aching bones! for now!
Bad news: lack of appetite and nausea is back. I didn't want to get out of bed today. Did you know that chemo also causes lots of burping and heart burn? Oh my heart. It burns. And last night by the end of the meeting, my hands turned into claw hands and wouldn't unclench. I couldn't even turn on my lamp. Dang neuropathy.
Good news: tomorrow is my last day of chemo this round.
Better news: Debbie is coming this weekend. Oh my goodness. I can't wait.
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