Thursday, December 30, 2010
Perhaps it's the anticipation of knowing how certain chemo treatments or meds or doctors appointments (constant waiting!) will turn out--that my mercaptopurine will cause a splitting headache about three hours after I take it, or that the asparaginase will cause some kind of reaction. And knowing that I'll have to go get blood drawn, and it'll take an hour to get the results, and that I'll have to walk all the way from the outpatient lab to the doctor's office then to the outpatient infusion center. All those steps down those hallways with the crazy random yellow hospital linoleum.
And the unexpected things: like when sweet nurse Cathy calls from the 8th floor where I was Monday night just to see how I'm doing, and to assure me that with the proper pre-meds I probably won't have the same reaction to asparaginase tomorrow and that I shouldn't freak out. Or when I get a pair of these in the mail (my cold feet thank you Heather & family!).
But it's these little bits of knowledge that help me figure out how to make it work. Why not take mercaptopurine at night--and pre-med with some extra strength tylenol? How about expecting that my lab results will require some platelets, like they did yesterday, and always take a book (ALMOST done with Founding Mothers, thank you Liz & Trent!)?
It's those small, tender mercies that help me find the ability myself to shake things up a little bit. What if I feel like making my bed today and taking a nap on the couch instead? What if I feel a burst of energy and am able to respond to a bunch of emails (and then the darn people email me back and I have even MORE to catch up on!)? And what if I don't feel good and just need a nap? Or I can't think of anything I could possibly stomach--and that's ok? It's ok. It really is. The monotony, the daily-ness, and the unexpected.
After all, the show must go on.
Goodbye yesterday to Mom & GranNomi. You were so sweet and patient and kind to have the most boring Christmas ever with me and to take such good care of me. And thank you roommates for coming home and helping me feel normal again.
Tuesday, December 28, 2010
After a short (well long because I did NOT sleep) night in the hospital, I am home. Home again, home again, jiggety jigg. In my own bed. Phew!
As much as I grumbled yesterday when the nurses downstairs in outpatient infusion insisted on admitting me because of my low counts, and the nurses upstairs were sure I'd be discharged after I got my precious and energizing blood, the on-call oncologist voted to keep me overnight to administer today's chemo upstairs.
Well done, Dr. Rodriguez. Even if I complained about sleeping another night on that rubber mattress and facing the thought of hospital food right when my appetite was making its way back. It paid off today when I had a major reaction to the chemo they would have given me downstairs this morning. Instead, my primary oncologist, Dr. Feigert, was on the 8th floor, and the two very best chemo nurses immediately jumped on and saved me with an emergency dose of steroids and ativan.
Thank goodness, because I could NOT breathe and I thought I was going to die.
But I am alive to tell the tale. And I'm home in my own bed. And we have a plan for that same chemo treatment on Friday morning (premed with steroids and ativan).
Tender mercies all around, friends. I had an added dose of humility and gratitude for being in the right place at the right time, for capable medical hands and meds, and for a renewed determination to rise up.
And I still loved the breeze I felt when I was rolled out of the hospital again!
Monday, December 27, 2010
Sunday, December 26, 2010
What a Christmas!
For a while there I thought I might have to spend it back in the hospital... my white blood cell count dropped from 11.2 to 1.1 (normal is 4-10), and I'm back to being neutropenic, which means highly susceptible to infection. I've had some pretty yucky chemo side effects--nausea, no appetite, severe headaches, fatigue.
BUT... nothing that a little lovin' from Mom and GranNomi couldn't handle! It's been the most relaxed Christmas I've ever had. We would play a round of dominoes (as pictured above), then I would go take a nap before the next round. We would watch a movie, then take another nap. We opened some presents, then took a nap. Seriously. A round of Skipbo from the couch, then another nap.
The best part was Christmas dinner! Here's what you have for Christmas dinner when there are only three of you and one of you (you guess which one) has had some recent stomach issues (yes, that's me in the pic above eating Indian food because it sounded good. No it didn't last in my tummy): rotisserie chicken (we love Costco); 1 sweet potato, split three ways; mashed potatoes; steamed veggies; jello salad; rolls. I ate for about five minutes, then adjourned to the couch so I wouldn't have to see and smell food. But it was so good and it stayed down. Yahoo!
Thank goodness for family. And for doing absolutely nothing except keeping food down. Thank goodness for wonderful gifts and friends (you London girls--I loved that package!). Thank goodness for not having to go to the hospital--I'm done with the awful Ara-C chemo shots (yes, I have to be there at 7:30 tomorrow morning for a four-hour blood transfusion).
And thank goodness for the true meaning of Christmas. My favorite Christmas message this year is an old one from Jeffrey R. Holland: the story of the birth of Jesus Christ is one of intense poverty. Not only was there no room for Joseph and Mary in the inn, but this was "a night devoid of tinsel or wrapping or goods of this world. Only when we see that single, sacred, unadorned object of our devotion--the Babe of Bethlehem--will we know." Mary and Joseph did the best they could with their circumstances. And from the beginning, Christ learned how to "descend beneath every human pain and disappointment. He would do so to help those who also felt they had been born without advantage." We know that soon after, angels heralded the news of the birth to shepherds, who came quickly to bless and worship the babe, and that wise men came bearing gifts. The hope and promise of triumph holds greater significance as I have come to understand the pure need for grace and divine assistance in the most impoverished moments of my life.
Wednesday, December 22, 2010
That encapsulates how I feel right now. The command form. I wish I could dictate so many different things. Eat. Don't hurt. Get some energy. Get stuff done. Get out of bed.
And of course, I wish my hair would grow. It actually is. It's peach-fuzzy right now. I had a patch of dark hair in the back, like a reverse bald spot, but it rubbed off, just like a newborn baby's hair. Now it's growing in and it itches. But. It'll fall out again--probably starting next week, based on the chemo schedule. My head just gets so cold that I keep it covered. I even sleep in my Northface polar fleece hat with underarmor. Love it.
Today I went in for my chemo shot, and I just hurt all over. I'm dizzy and my head pounds--all side effects of zofran so I don't have nausea from my chemo. We stopped for lunch at the snack bar before my next appointment. And I sat at that table and cried. My panino was gross, I dropped a penny at the cash register and my head was swimming as I bent over to pick it up (why did I think I needed to retrieve it?!?), and I had to go to the bathroom and the closest one was a long ways away. And there was a creepy guy who kept looking at me. Jealous of my head, I bet. Then my gyno appointment ran slow and I didn't think I was going to make it in that waiting room. But my sweet doctor came when she heard I wasn't feeling well and put me in a room so I could lay down and gave me a hug. I have the most amazing medical team ever. My chemo nurse today--the sweet Irish woman--gave me a big hug, too.
I hate that chemo kicks my butt. I hate that my days are so inconsistent. I love that I can come home and sleep. I love sleep. I love my bed. I love my neckwarmer. I love my dear friends and nurses and doctors. And now I'm going to sleep, dammit, sleep.
Monday, December 20, 2010
cue reprise from Wicked...
Final results from last week's spinal tap are clear! No leukemia in my brain! Hooray!
Great news after a long, yucky weekend of nausea and no appetite and no energy.
It was exciting enough that I ate the doughnut MB brought me for my ride home today. And I love that he sopped the car so we could say a prayer of gratitude.
This good news fuels me for another week of chemo and preventative zofran! Take that, you!
Saturday, December 18, 2010
- Sincerely giving thanks not only helps us recognize our blessings, but it also unlocks the door of heaven and helps us feel God's love.
- If we reach deep enough and look hard enough, we will be able to feel and recognize just how much we have been given.
- I am grateful for the kind, wonderful people who give me rides to my appointments and wait with me while I navigate my full-time job of waiting. Today BD picked me up with a ginger ale (perfect for my rocking stomach) and some Hershey kisses (couldn't quite stomach them). Yesterday JB danced while I got a shot in my booty. I wish I could list all of them--these wonderful people. I have chemo-induced neuropathy in my toes which sort of scares me from driving safely. That and I'm just so tired that my reflexes are pretty bad. So safety first!
- I am grateful for people that bring me food. AS just brought me fajitas from Rio Grande--and I ate one! It's lasted a whole 30 minutes and counting! YM brought some Venezuelan deliciousness and made me eat before my regrettable Thursday chemo (which produced a bout of nausea and no appetite since then!). SB brought chicken noodle soup yesterday and crackers, always perfect for such occasions. And my sweet roommates have catered me with popsicles and potato chips--hey, you go with what you can stomach, right? And so so so many other treats and meals from so many people. Thank you.
- I am grateful for the people that come visit. Yesterday MCS came and brought her violin. It was so beautiful--and reminded me of my Grandad (and uncle Steve and cousin Arian) and just soothed my soul. The other might PP came and cooked dinner, then seriously cleaned my room. It feels so uncluttered and clean now. Then she rubbed my feet! Yesterday MA came and sat downstairs while I showered so I wouldn't miss the Fed-Ex guy. I could go on and on and on. I so appreciate these kind visits. Every day someone calls me to make sure I'm good.
- Hats! People have sent me the GREATEST hats ever! Oh I love them! I have beanies and knitted hats and fancy Sunday hats with feathers and bling. I have Brittney Spears hats and scarves and my bald, cold head thanks you. I feel so covered--both physically and emotionally. I can't explain what that means to me and my very vulnerable head. For some reason my head has been one of the hardest parts of this experience.
- I am grateful for books. People have sent old classics and new favorites. I have a stack of reading material--and I am so so so grateful for it. From spy girl detectives to Pulitzer Prize winners to C.S. Lewis to church books. I'm covered. I don't always feel like reading, but sometimes reading is the only thing I can do. It's the perfect escape. And the magazines! Thanks, friends.
- I am grateful for gifts of money. I have a really hard time wrapping my head around the generosity of so many people in so many different situations. Thank you. Thank you to the E family and the B family for sharing your Christmas with me. Thank you to the anonymous people. Thank you SB and SS for the Delta miles so my mom and grandmother could come for Christmas next week. Thank you for the countless people who send checks and cash. I can't express my gratitude--I just feel so taken care of. And so indebted. Thank you. I can handle the prescriptions and the gas and the food (ok, so I haven't been buying too much but I will the second I can think of something!), the rent and the bills. This is a whole new life for me.
- Thank you for the pajamas and lounge wear and socks. I think I have put on real pants four times in the past six weeks, and a skirt three times. And it was great to feel like a real person. But there is nothing like feeling warm and comfortable.
- And the quilts! I don't know what to say! Thank you JJ, JB, NS, AP, MR, RA. You pulled together a work of art in a matter of days and I love the bright orange and cheery green. Thank you LBC and AUS for the Union Jack delight--London Girls ARE forever. Thank you DW for the brown and yellow Ohio lovelies. Thank you JPH for the patriotic stripes. You have lifted my spirits and warmed my body. Thank you, ARH, for sending our fave family blanket. I know I need to upload pictures, but I just don't have the energy right now.
- Thank you for all the cards and emails and letters and phone calls and facebook messages and IMs and texts, for the sweet thoughts and uplifting inspiration. From the sister missionaries to the printed talks to the mix cds. I so wish I had the energy to respond to each and every one. It drives me nuts. Please know I read each and every one and feel your support and love. Thank you.
- Thank you VA for the beautiful Christmas nativity! Oh your work is so exquisite! Check it out here. I love it. It makes me shine.
All that he requires of you is to keep his commandments; and he has promised you that if ye would keep his commandments ye should prosper in the land; and he never doth vary from that which he hath said: therefore, if ye do keep his commandments he doth bless you and prosper you.
And now, in the first place, he hath created you, and granted unto you your lives, for which ye are indebted unto him.
And secondly, he doth require that ye should do as he hath commanded you; for which if ye do, he doth immediately bless you; and therefore he hath paid you. And ye are still indebted unto him, and are, and will be, forever and ever. (Mosiah 2:22-24)
Thursday, December 16, 2010
Today I had my blood drawn, then wait for the results, then an appointment with my oncologist. He's still waiting on one more test result from the spinal tap, but he said it looks clear so far. He's going to the Caribbean tomorrow (and he so deserves it. I told him to spend one minute in the sun for me.), so I'll have to ask the on-call dr. to read me the results tomorrow.
Then I had to sort through a prescription that I was supposed to start on Tuesday. It costs a lot of money, and because I've already hit my prescription limit on my insurance, and I'll have to take this drug for basically the next two years, I have an amazing prescription-nurse who has been working since Thursday to find some prescription program to pay for it. We thought she found one, but it panned out. Then another one panned out today (because I'm a full-time student. Explain that!), which is when I started crying, while I was on the phone with the Arlington Free Clinic while sitting in her office. The nurse started crying too--she was so frustrated! The lady on the phone started crying, too. It was awful. At that point I was ready to give my first-born child and just pay for the stupid prescription, when my sweet nurse found another low-cost program that is shipping the meds to me tomorrow. We all cried again and then it was off to my next step: the chemo shot.
You would think when I'm scheduled for a chemo shot, that's easy, right? Well, they can't order the chemo until I get there. And today there happened to be a million department holiday parties all over the hospital, and apparently a meeting for the pharmacists. Now my pharmacist friend explained to me the other night how hard it is to mix chemo, but friends, it took a full 2 hours to mix a tiny shot. And as I sat there waiting, I looked around at my new peer group in the Infusion Center. I am the youngest by far--by say 50 years (ok. maybe 30 years.) Oh. my.
That took forever. And I was starving. So Stalwart Sue, who sat with me all day long, and I stopped at Burger King on the way home. Too bad it didn't last long. But thank goodness for Zofran. And Sprite. And my own bed. And Glee episodes on the DVR.
I'm looking for another job. I hate this one.
Tuesday, December 14, 2010
- I can do chemo as an outpatient. Do you realize what this means? I CAN COME HOME. And here I am.
- I am grateful that on long days, if I get there early enough, I can get a little room with a bed. Not just a recliner in the general infusion areas.
- Which is good... especially because one of my chemos today has major effects on my bladder, so they had to give me like 3 other drugs to protect my bladder, which meant a serious need to go to the bathroom like every 15 minutes. You all who know me well know how well that works (yeah, I'm talking about you, LH. In front of Blair House.).
- NS. Period. She picked me up this morning, and after we found out it would be 7 hours, she went to my house to get my quilt (I was FREEZING! Zofran always does that to me!) and my laptop and some Panera soup yumminess, then came back to pick me up in between carpooling her children all over town. Bless her.
- I love a good, organized, slightly OCD nurse. Love her/him. I had a great nurse today, and I met the nurse supervisor who does all the scheduling, who answered ALL my questions and warned me that she would be changing things up a little when she knows it'll make me sick (shot vs. IV). Plus she's the one behind color coordinating my schedule. And she cleared things up with some scheduled shots that I do NOT need and some pills that I DO need. You really have to stay on top of things.
- Whenever my oncologist is around, he always stops by to see me and answer any questions. I have an appointment with him on Thursday, when we'll get the results from my spinal tap. Pray for no leukemia in my brain. That means trouble plus more spinal taps.
- I love happy drugs. I had them yesterday with my spinal tap, which I'm convinced is why I survived. I think some of it has carried over today. That said, I'm the world's biggest couch potato. I have no energy. I'm OUT of it. I worried yesterday that my towel rack was crooked. And then I just gave up and took a nap. And watched Househunters International.
- I love my roommates and friends. Last night I laid flat on my back on my futon. VA came up to watch TV--we found the Sing Off. VA settled in my bed, and then LC came and settled in my bed with her. It was an awesome night. KB came but didn't fit in my bed, so she went home. Really she went home because her husband wanted to have FHE. Tonight DS carried my laundry downstairs so I could do it.
- And the best? For the next two weeks, the only chemo I need is a shot!!! How fast and easy is that?!?
Monday, December 13, 2010
It was a piece of cake, compared to the bone marrow biopsy, and even getting a picc line or the ultrasound. Maybe it has something to do with the "happy drugs" they gave me (one nurse even called it the "bravery drug"). At any rate, I didn't feel a thing. I just had to lay on my back for four hours after to seal the puncture.
FYI1: if the wound doesn't seal, the lack of pressure will cause major headaches. Do you know how they make the wound seal? They take some of my own blood and cover the puncture area, and my blood will make a glue and it will automatically seal. Cool, huh? Not that I hope we get to that.
FYI2: the spinal tap (or lumbar puncture) is to check the spinal fluid for any negative side effects from my first round of chemo, and to check for leukemia in the brain stem, a secondary place besides the bone marrow where the cancer can spread easily. The results should come in a couple of days. They also administer one of my new chemo drugs for this regime into the spine.
Many thanks to dear Emily, who sat with me the whole prep time and the whole four hours after while I lay flat on my back. She even fed me chicken strips and french fries. It's a good thing that baby Claire gives her good practice to feed people! And to Lee Ann for bringing yummy dinner. I've been sleeping and laying on my back all day ever since.
Here's to four more spinal taps over the next two years!
Sunday, December 12, 2010
Okay, so for the real reason I get to sneak on here again . . . Jenny continues to need a lot of help with rides, meals, and visits to check in on how she's doing. (That girl has quite the schedule now of DAILY appointments! And no breaks for holidays!) In order to coordinate this effort, we have set up an online network which has a calendar and list of needs that we continually add to. If you live in the area or are visiting and would like to be a part of this online network, please join by sending an email to welovejennyreeder (at) gmail.com and let us know how you know Jenny and we will give you the information to join the network. By joining this online network, you are not committing to service events, it just gives you a chance to see the opportunities and decide whether you would be able to participate. Jenny and all of us thank so many of you who have been so helpful to Jenny while she was in the hospital and now that she is home.
Saturday, December 11, 2010
Last night as I knelt down to pray before going to bed (yes, I'm that kind of believer), I felt a prayer well up out of my core that I didn't know was there. I always thank God for the very specific blessings of the day, and after my gratitude came this inner voice, the real Jenny Reeder, that I forgot existed. And this is what she said:
I have a mission to perform in life. I must fulfill it. I have things to do. I must get through this. I must push past the pain and discomfort of this temporary thing in my life. I cannot let cancer beat me, nor can I be a victim to it or to its many fears. I must rise up and fight it.
And that, ladies and gentlemen, was a turning point for me. My life is so much more than complaining about tingling feet (and oh boy, do they tingle and are cold!), or being scared of the first of many spinal taps and many more bone marrow biopsies. I am greater and bigger and much more long-lasting than this. And I've GOT to get better so I can get to work.
Thursday, December 09, 2010
Many thanks to sweet Janiece for sending me this poster. It was on the door in my hospital room, and now it's on the wall in my room, staring me in the face, daring me to have courage.
They told me it would happen, the depression stuff, that it would come and go. I thought, "Oh, they don't know me. I've got this great support system. Plus I have faith and strong religious beliefs." I smiled and said, "Ok. Thanks." And I forged forward.
Well, it hit. Today. I didn't want to get out of bed. I'm tired. I'm tired of all of the rigamarole of my new lifestyle. I'm tired of using the neti pot on my nose, of gargling salt water, of trying to stay hydrated, of getting blood drawn, of waiting for doctors and nurses and phlebotomists. I'm tired of very short, newly growing hair covering my pillow every morning and my hats and scarves. I'm tired of chemo-brain. I'm tired of being tired. And I'm tired of carrying on.
Part of it is because my mom left yesterday, and I'm here. Independent. Alone.
But so not alone. Sweet Krysta picked me up this morning and brought me home today, and filled me with news of dear people around me who are also struggling. Shireen met me at the hospital as I waited for blood labs and just sat with me and talked. She brought me a huge basket of Trader Joe goodness. Then when I could not make myself get up out of bed after my afternoon nap, Laura called and came over. She helped me make a list of things and she vacuumed my room. Julie, Elliot, and Bronco brought me some delish butternut squash soup and bread. Ken left a book at my door.
And as I tried to sort through my packet of my next round of chemo and all the side effects, my mountain of emails and all the thank-you cards I should be writing, the yoga I should be doing, the piles of papers I should be organizing, and the overdue articles and reports I should be writing, I decided to start with some scripture studying and seeking faith. Just a few I found:
- The Lord in his great infinite goodness doth bless and prosper those who put their trust in him. (Hel. 12:1)
- Trust in the Lord with all thine heart, and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths. (Prov. 3:5-6)
- Faith is things which are hoped for and not seen; wherefore, dispute not because ye see not, for ye receive no witness until after the trial of your faith. (Eth. 12:6)
- The trying of your faith worketh patience. But let patience have her perfect work, that ye may be perfect and entire, wanting nothing. (James 1:3-4)
One last good news: my bone marrow biopsy came back clear and we proceed as scheduled! I'll be honest--I wasn't in the frame of mind to ask more questions when the nurse called (and she's the less-than-helpful one), other than to make sure it was good news. It is. Keep calm and carry on.
Wednesday, December 08, 2010
So... some explanation based on numerous questions:
- I have A.L.L.--acute lymphoblastic leukemia. Acute means it came on super fast--my oncologist said if I had had a blood test three months before, this never would have shown up. Lymphoblastic means my bone marrow is producing distorted lymphoblasts instead of the correct ratio of white and red blood cells. As one friend said, it's really an awful name, but I should work with the acronym, playing on the famous Mormon hymn, "Come, Come Ye Saints": "A.L.L. is not well, but A.L.L. is OK."
- My bone marrow biopsy from yesterday will determine whether or not my leukemia is in remission. That means a close look at my bone marrow will tell what kind of blood it's making--if it's making regular ratios of the right kinds of white and red blood cells, then I'm in remission. If not, then we fight it more aggressively.
- I will have chemotherapy treatments for the next two years, even if I'm in remission. The first phase was an "induction" phase, and the next two phases are "intensification" phases, followed with "maintenance." This is to ensure that the cancer is indeed gone and doesn't return. Supposedly these next phases are not as hard as the first one.
- If I'm not in remission, this will change the next course of chemo to something more aggressive. But we'll talk about that when we get there. My oncologist doesn't think this will happen, based on how I've responded to this first round.
- Chemo kills my blood cells, both the bad stuff (lymphblasts) and the good stuff, which is why I've had to have several transfusions, platelets, and shots to boost my white blood cells. And this is why I have to have my blood drawn nearly every day. So far since I've been discharged, I haven't needed anything extra. But I will. Oh I will. And I'll be prepared with benadryl to prevent another allergic reaction.
- I am scheduled to start my next round of chemo on Monday. Day 1 is a spinal tap to see how the fluid in my spine has held up through chemo, and to administer the first type of chemo through my spine. It's done in the radiology department in the hospital. I'll be honest: I'm a little freaked out. And I'll have to do this on the first day of each round of all remaining five rounds of chemo. BUT, they say it's not as bad as a bone marrow biopsy (or as I like to say, in a Greek accent, bibopsy. Name the movie). I've done that. Twice. So I can do this, right?
- The remaining 24 days are done as an outpatient in the Outpatient Infusion Center at the hospital.
And I'm saving up tonight for a Ward Council meeting. I'm so excited for an hour or two to get out of my bed, NOT for a doctor's appointment. I get to put on a skirt! and boots!
Tuesday, December 07, 2010
It's [my cyst] dead!
The cyst of my ovary is dead!
The wickedest cyst there ever was, [certainly not in all reality--but for today, in my body]
The enemy of all my future kids IS DEAD!
GOOD NEWS! GOOD NEWS!
This song from the musical Wicked has been running through my head ever since my sweet ultrasound tech last night told me that my ovarian cyst is no longer there. WAHOO! As I sat through the depths of an uncomfortable ultrasound last night, I was trying to prepare for the worst, and I was almost prepared for the worst case scenario, which in my mind, last night, in that dark, cold room, was a hysterectomy. But it seems that that scenario has been spared me.
I was so excited that on the way home, we stopped for ice cream. But then I was too tired to eat it. Man, I'm one tired person. I'm kind of a hot tired mess.
The other GOOD NEWS is that I survived my bone marrow biopsy this morning. I tell you, it's weird. But I also tell you that if you ever, ever have to have a bone marrow biopsy, I highly recommend my oncologist, Dr. Feigert. He's performed over 2,000, and he has it down to a very quick science. And his sweet nurse held my hand during all the really hard parts ("now you're going to feel some sharp pressure."). As one person said, isn't all pain really just immense pressure? Think about it. Results will come in two or three days. Let's hope it's the same kind of GOOD NEWS that I heard last night.
My mom is leaving tomorrow. Oh how I love her and how grateful I am for her to drop everything and be here with me, almost 24-7, for the past month. Oh how I hope she is able to pick up the remnants of her life and find a job. If you know of any jobs in the Provo area, please oh please keep us posted. And I can't wait for Mom and GranNomi to come back for Christmas.
Monday, December 06, 2010
- Wake up, have some breakfast, saran-wrap my picc-line arm, take a shower, get dressed. This sometimes takes me a long time, depending on how tired I am and where I have to be.
- Most weekdays: go to the hospital for lab work. This, I've come to learn, takes a while. You have to check in, like at a dr.'s office, wait to be called to a registrar/billing person, who takes forever to look you up and resubmit all your information every time--and last time I found like 6 grammatical/spelling errors on their patient consent form while I waited. THEN you go back to a room and have your blood drawn by a phlebotimist (people--remind me why I have a picc line? When I was in the hospital they drew blood and administered chemo/ivs in my picc line. Now I still have to draw blood. My right arm is turning into a big bruise).
- Go to the nurse practitioner at the oncologist's office. Luckily it's right down the hall from the hospital lab. Unluckily, it takes FOREVER for the lab blood work to be done, which is the whole reason to go to the nurse to look at my blood work to see if I need a transfusion or platelets or neuprogin shot to boost my white blood cells. The good news is that while my numbers have dipped a bit, they haven't dipped low enough for anything extra. The nurse asked me today what I've been doing--my levels should be much lower. I think that's a good thing.
- Go to any other appointment. For example, today I had an appointment with my primary care doctor. Luckily her office is in the hospital and she is awesome. Unluckily, I thought I planned it right to see her, get my lab work, and see my oncology nurse all in good time. Nice try, french fry. I waited an hour for the first appointment, which set everything off. By the time I was done with the nurse, I had to have food. Fast. Which means hospital cafeteria food. Which is not awesome.
- Usually I come home and crash for a couple of hours, then wake up in the late afternoon and enjoy the evening before popping my ambien so I can sleep at night.
- Or if I have the courage, I go for an afternoon walk. And if the wind isn't blowing.
- I have an antibiotic I have to take every 6 hours--and I have chemo-brain, so I have to set my alarm to remember. It still surprises me. I also have to use a prescription mouth wash to prevent any mouth sores/fungus (awesome side effect of chemo) and gargle with salt water and baking soda after every meal. And I have to use a water pic instead of flossing my teeth. I kind of like it better.
On other fronts:
- I get to go back to the hospital for an ultrasound tonight to check an ovarian cyst and fibroids. We have to figure out their condition and take some preventative measures before next week.
- I have a bone marrow biopsy tomorrow to see if I'm in remission. Pray for me. Not fun.
- I start my intensification round of chemo next Monday for eight weeks. Day 1 includes chemo through a spinal tap. Awesome. This round should be much easier than the last round. Serious awesome.
Sunday, December 05, 2010
Friends! I'm back! It's ME! I have so much to say and so so so many people to thank. It's a bit overwhelming. But, as with everything else in this crazy adventure, I can only take one step at a time. And today I want to talk about a few milestones which have become mighty tender mercies.
- Today marks one month--on Friday, 5 November, I got blood results at the student health center at GMU and was sent to the ER. Little did I know my life would never be the same.
- Tuesday, 30 November, I was wheeled out of the hospital. I'll never forget. It was about 60 degrees, cloudy, and all the brightly colored leaves that I had seen walking in were gone. But the breeze--the fresh air--I have never felt anything like it. I wanted to sit in the breeze and soak it all in. And sure enough, on the way home, I noticed trees here and there who had maintained their bright, vivid fall color just to see me home. I love how long seasons last in DC. And I love love love my own bed.
- Wednesday, 1 December, I went on a walk! Outside! It was wind-whipping cold, and I only made it across the street and half a block before being driven back home, but I was out! Untethered to an IV or neuprogenic room restriction! My cheeks become rosy in the cold and it felt great.
- Thursday, 2 December, I went back to the VA Hospital Center for lab work. My levels were all normal--even if it was the low end of the range. Take that, chemo (which is supposed to drop everything)!
- Friday, 3 December, daily lab work showed my CBC (complete blood count for you newbies) was down slightly, as to be expected, but not low enough for a transfusion, platelets, or shot to boost my white blood cells (they thought I surely would drop enough to need something).
- Saturday, 4 December, a walk all the way around the block with Emily and baby Claire. It was cold, but so so so great. Visits from old roommates (one came from Colorado and one from NYC with real New York bagels!).
- Sunday, 5 December, I ventured to church this morning! I slipped in as sacrament meeting was starting and out just before the closing hymn. It was delightful and wonderful and exhausting. And I wore my new purple hat--I'm going to bring hats back to church, I tell you. I came home and promptly slept.
And shout-out to Chris Jones in the hospital somewhere in California--be strong, my friend!
Thursday, December 02, 2010
Wednesday, December 01, 2010
Despite some drama at the time when she was going to be released, she was finally allowed to go home. She said she got teary just breathing the fresh air and feeling the breeze on her face. (Can you imagine how much we take just walking outside for granted. After today, I hope I never take it for granted again.) Jenny was also thrilled beyond measure to eat dinner at a real table (with a tablecloth no less!), in a real chair with a glass to drink from. She's been getting a little excercise going up and down stairs as well.
Today was not all sunshine and roses however. This morning's final chemo treatment gave her her worst reaction yet. Jenny could feel the burning from the inside, it made her throw-up and put her in a lot of pain. But chemo is DONE! There is still antibiotics for 3 more weeks, and a huge maze of insurance, perscriptions and appointments to get through, but she knows that somehow things will work out. The Lord is in charge and some how everything is going to be okay.
The Sister Missionaries stopped by to visit with her yesterday and shared a talk from Dieter Uchtdorf about Patience that lifted her spirits tremendously. President Uchtdorf says: "patience is not passive resignation, nor is it failing to act because of our fears. Patience means active waiting and enduring. It means staying with something and doing all that we can—working, hoping, and exercising faith; bearing hardship with fortitude, even when the desires of our hearts are delayed. Patience is not simply enduring; it is enduring well!"
I am so proud of our Jenny for enduring well.
Now that Jenny is home many of us would like to rush to her side to be uplifted by her amazing spirit and to offer what comfort and good cheer that we can. In light of that enthusiasm I would like to share some important guidlines that Jenny's Bishop (local church leader) has outlined:
Please call before stopping by to visit Jenny, and please understand if Jenny declines some visits so that she can rest and recuperate. In addition, visitors who are not 100 percent healthy (or whose families or roommates are not 100 percent healthy), are not permitted to visit -- so if you have a cold or even just feel a cold coming on (or have a sick child or roommate), please wait to visit Jenny until you (and your children and roommates) are absolutely healthy. And children -- healthy or not -- are not permitted to visit at this time. Thanks in advance for complying with these restrictions. We want to do our part to watch over and care for Jenny.
My thanks to all of you who are doing so much to watch over and care for Jenny. I think I speak on behalf of many of us JennyReeder fans who are far away and feeling rather helpless in our long distance status during this time. Our prayers are not only for Jenny, but for the many people who are doing so much to help our beloved friend. Thank you!
Monday, November 29, 2010
Sunday, November 28, 2010
Jenny needed the Sacred Sunday Nap a little earlier today than usual, because she was woken up at 5 or 6 o'clock this morning by someone wanting to take her blood. She couldn't fall back asleep and finally resigned herself to a few hours of wakefulness until her blessed Sunday Nap mid-morning. Ahhhh....
Here's the news on the cancer front:
- Jenny's white blood cell count is down but her platelet count is up, which means her bone marrow is doing something good. Hooray!
- That Sacred Nap was even more important today because Jenny had some unexplained bloating and cramping that totally wiped her out. (As if getting woken up at 5am by someone poking a needle in your arm isn't tiring enough!) She's going to discuss this more with her doctors tomorrow to try to identify the cause.
- Jenny is probably not going home on Monday.
- Jenny's will receive her last chemo treatment on Tuesday, which means she could go home on Tuesday or Wednesday.
- In order to be released from the hospital, Jenny has to have a neutrophil count of 1000. (She's not 100% certain what the neutrophil count/measurement is but has been told it has to do with the ratio of white blood cells to red blood cells. According to an entry on wisegeek.com, a neutrophil is a type of white blood cell.) Right now, her neutrophils are at 700.
Saturday, November 27, 2010
As Jenny was telling me how she was experimenting with new looks, she sent this photo to my email. She can totally rock pink.
Friday, November 26, 2010
While some of us were out getting awesome Black Friday deals, Jenny was getting her own kind of Black Friday deal, in the form of great news from Dr. Wonderful.
Apparently, during today’s visit, Jenny learned that, although she is only on day 18 of treatment, her body (and blood) is acting like day 22. This is GREAT news!
When I asked for a translation of what that meant, Jenny explained, “My blood counts are showing that progress. My white blood cells are going up and the red blood cells are stable. That means that they are not going up, but at least they are not falling as they have been for the last few weeks. However, they’re still pretty low.”
The best part of this news, is that now there is a slight chance that she can come home this weekend, or maybe Monday. Jenny tells me that the oncologist that is on call this weekend is very (almost too) conservative, so it wouldn’t surprise her if she didn’t get the go ahead to go home from him.
To be able to be cleared to go home, Jenny has to
1) Be weaned off of all of her IV antibiotics. She has been weaned off of one now, but isn’t sure how many more she is still on.
2) Be weaned off of the steroids.
3) Finish off her chemo… maybe. She had chemo today and will have one more round before she’s done, but the doctor thinks she may be able to do it outpatient.
4) Learn how to tie a mean headscarf. Ok, just kidding. But, if you do know someone that has headscarf tying skills, she would totally love to be put in touch with them.
There are so many things that excite Jenny about the prospect of coming home. “I can’t wait for fresh air! I can’t wait to eat a tomato or fruit, or carrot sticks or sleep in my own bed.” She probably would have continued on, but then made sure to point out that she’s trying not to get her hopes up too high, she’s counting on Monday-ish, but does not want to jump the gun and come home before her body can handle it.
In the spirit of Thanksgiving, I asked Jenny to give me a list of things that she is thankful for. She had so many that I stopped her after the first 10.
So many I am thankful for:
1) SO many people that call and say they think of me all the time.
2) People praying for me
3) People who send emails and texts…. All the people that send me stuff!
4) A girl detective/spy school book that was sent to her from a friend
5) The book of Sudoku puzzles that Sheila gave me
6) Ginger Ale – a rediscovered love
7) Michelle Loosli’s roasted cauliflower
8) People that bring me food
9) So thankful for the quilts – they brighten my room
10) Kind, kind nurses
Thursday, November 25, 2010
Wednesday, November 24, 2010
Jenny is feeling better now that she has gotten a little more sleep, though last night she didn't get as much as she would have liked. She says she has been sleeping better overall, though, and that it has been AMAZING.
2. A hearty appetite.
A friend is bringing Jenny Thanksgiving dinner tomorrow (thank you, MM!). The doctors tell her she is malnourished and she tells them that she's eating as much as she can. Hopefully she can follow the American tradition and chow down tomorrow.
3. Her own bed.
Jenny told me that they may release her at the end of next week (or sometime near then), so I'm adding that to my prayers and hope you all do the same!
We are all grateful for you.
Tuesday, November 23, 2010
- Jenny Reeder has some new blood! Yeah!
- She also has a bunch of new platelets! Also yeah! Today her platelet count is 44. Normal is 100 but at least it's not 10 anymore.
- Her protein count is very low. To help her get it back up her mom went to Ted's Montana Grill and brought her a big steak. She told me she's going to also help raise her protein levels with some delicious Ensure. "At least it's chocolate," she quipped.
- More big news - she slept last nigh! The doctor upped her Ambien dosage and it worked!
- Jenny Reeder was STANDING as I talked to her this afternoon! She also sounded so much better than I had imagined. She still feels pretty crummy but being able to stand is a big deal.
- She's had some lucid moments lately and has been able to do some Sudoku and just finished the Hunger Games trilogy.
Monday, November 22, 2010
You know that scene in THE WIZARD OF OZ where Dorothy can't stay awake in the field of poppies? She has no choice but to sleep and the sleep comes easily?
Well, that's what we need for our Reeder.
She so desperately wants to be able to get some good rest so she can get some strength back. And we need to pray...for sleep.
Today was "relatively better" (so much of this is all relative, isn't it?)
The CT Scan was the easiest thing she has yet experienced. 3 minutes and it was done. They confirmed she has sinusitis (my apologies to the good spellers out there) but it's a lot better today. It's tender but she can breathe.
She watched a little GILMORE GIRLS tonight...so that explains a lot of what made the day better (who can't benefit from a little bit 'o Lorelei?) and her mom is still there and that's just such a blessing.
Visitors have slowed down and Jenny is actually grateful for that. It's just so tiring. But, she knows she is loved and prayed for and is so grateful for everyone's thoughts and kind deeds.
And now we just need to pray for the best night's sleep she's had in a long time.
God can do that.
He can put her in a little field of poppies and help her sleep tonight.
Pray that He will.
Sunday, November 21, 2010
As I'm sure you've all been able to piece together from the blog posts this past week, The Storm means that Jenny's body is simply getting beat down by the chemo. Positive attitudes and supportive friends notwithstanding, it's a rough ride and it's taking a toll on Jenny.
Since the doctors discovered Jenny's infections, she hasn't been able to leave her room for her daily walks due to the increased risk of further infection. Not that she has the energy to go for a walk most of the time anyway. Nor much of an appetite either (but also no nausea lately--yay!). Her good friend Mauri brought some falafel last night that tasted so good.
Today's big news that Jenny wanted all her blog readers to know about is that she spent an hour trying to blow her nose. Yes, you read that right. It took her an hour just to blow her nose. Here's how it went: Spray saline solution into the nose, try to blow the stuffiness out. Repeat. Repeat again. When all was said and done, some "scary stuff" had come out and she'd used almost an entire box of tissues.
When asked about her hair, Jenny said, "I don't want to talk about that." It has started to come out.
In spite of being in the middle of The Storm, Jenny continues to look for the positive elements in her days. For instance, her two sisters have been here all weekend, visiting from The West. (They fly home tomorrow.) It's been wonderful to have them here, not only to boost her spirits but also to take advantage of their mad artistic skillz. To wit, today they gave Jenny a pedicure. Not just any pedicure, but a very snazzy designer pedicure. Check it out:
This just in! One of the blood infections Jenny has is connected to her sinuses (hence, all the nasal congestion). Consequently, she's going for a CT scan (tonight?). Keep your fingers crossed they'll figure out what's going on.
Jenny continues to be very popular and hosted a steady stream of visitors this weekend (in addition to her sisters). She appreciates all the love and support everyone is showing her and enjoys seeing her friends. She also appreciates it when visits are short, as she tires easily. In fact, she had to end our phone call this afternoon after only a few minutes because all the talking was leaving her out of breath. Please keep that in mind when going to visit.
Tomorrow Jenny will get a new PICC line put in and another round of chemo. Two weeks down and two to go! I'm sure we are all counting down the days with her until the chemo is over. Hang in there, friend! I have no doubt you'll weather this storm and soon you and all your new white blood cells will be basking in the light of the rainbow that follows.
Saturday, November 20, 2010
When I visited Jenny last weekend I took pictures of the views out her hospital window, about at the level of her bed, to give you all an idea of what she sees everyday.
Of course then I had to ask her about her favorite views, the good views, the bad views, the funny views... here are her answers:
Not-so-pleasant views: the bottom of a barf bucket, the low numbers of my blood counts on the charts I keep every day, the one mean nurse missing a tooth, and sometimes the sight of that black room service tray...
Good Views: The favorite quilt from my childhood. We always fought over it--it was so soft, yellow with orange ties. Whoever was sick got first dibs. It's been patched up over the years. After her own health scare and legitimate "claim" to the yellow blanket this summer, my sister Annie just mailed it to me!
Whenever I get a prescription or new iv, the nurse has to scan my wristband. So I see a lot of red-green-blue barcode light. I had my first wristband for a week and a half before it started wearing off. Then the scanner took forever. Finally I got a new one that is good as new!
When I have the strength and courage to go for a walk, I like to see the views from the other side of the Robertb E. Lee oncology wing. From one window I can see the Masonic Temple and from another I can see the Washington monument and the capitol. Quite impressive! And of course I love to see the way the sun shines differently on the beautiful colored trees.
Views that are missed: I miss fresh air and mountains. I miss driving and seeing my neighborhood and the little girls playing dress-up next door. I miss my nieces and nephews. I miss seeing my bedroom and all my books.
But mostly I miss energy and talking without losing my breathe and running. One day... soon!And you know Jenny, we all miss seeing you on a regular basis! Keep looking for the good views!
Friday, November 19, 2010
Here's a recap:
The day started out on the wrong foot with a night of little-to-no sleep. First, a nurse was late bringing her the evening dose of medications and antibiotics. Then, the TV button broke and needed to be replaced. After that was fixed, her light wouldn't turn off - so they had to replace that button as well. What little sleep she did get was not quite restful, because of a stuffed nose. The main she is feeling is in her nose/sinuses because of the infections she has.
Speaking of infections, the day did not get any better when she learned that her PICC line needed to be removed because of them (the infections). This fact has caused the most tears, which she insists are really because she's so tired. As usual, Jenny explains that even though she is not happy that it needed to be removed, it is really a good thing. Though they will have to "poke" her every time she needs an injection or to draw blood, (causing more bruising than normal), this does mean she will have a three day reprieve from Chemo, which they will do again when the PICC is replaced in three days.
Jenny told me that her friends M & J were there to distract her and tell her funny stories while the PICC was removed. She was so grateful for that!
She is worried about her insurance situation. It seems that she could make some changes that might help, but it would put her "student" status at risk, and that may cause her to loose her fellowship. Our bishop has assured her that he will figure it out.
This evening, things were looking up. She ate pasta today and was craving pizza this evening. Her sister just arrived in town from Denver, bearing pictures of Jenny's nephews and nieces. One thing she has missed most while in the hospital is that she cannot be around children. She has loved the letters, drawings and videos her little friends have sent to her the last two weeks.
The doctor has told her to expect the next 10 - 14 days to be the worst of the treatment. Although, as reported yesterday, the leukemia is gone (along with all of her blood cells), Jenny is really worried about what is going to grow back. She says this process is simply exhausting.
Jenny wanted to reassure everyone that she gets every email, Facebook message and card - and REALLY appreciates every one of them. She apologizes that she can't respond to all of them. Please know that she is receiving them and that they are helping her.
Thursday, November 18, 2010
Jenny had good news and bad news for me today, and I have to say that I am super excited to say that the Oncologist came in today and told her that the LEUKEMIA IS GONE! Awesome right, Jenny says that she thinks that just means all her blood cells are gone, but its a huge victory. This means that she will continue her chemo cycle (halfway done) and then they will do a bone marrow biopsy at the end of the month to check for remission. The chromogenetics test came back totally fine, and it also means no bone marrow transfusions. So a banner day in Jenny Reeder Land. The bad news is that Jenny has no white blood cells (the doctor said she might have 2 of them swimming around in there). She has three infections one in her colon and two in her blood, so they are pumping her with antibiotics. She is worried that they might remove her PICC line, and she really doesn't want that to happen so lets all pray that she can keep it in. She is really tired and couldn't find the energy to pick up a book today, so we know that means she is crazy tired. She was in great spirits and was buoyed up by the good news (i think we all are). Lets remember that this fight is not over and we must continue to pray for her and visit her. We love you Jenny and love the new do' you look fabulous and I think you totally rock the pixie!
Wednesday, November 17, 2010
The caregivers discovered today that Jenny has an infection. They can't figure out where it is, but know she has one because she has a fever. The steroids also make it difficult to determine where the infection is. She says she thinks it might be sinuses because her nose really hurts.
Yesterday Jenny didn't feel up to blow-drying her hair. The nurse came in and told her it looked like she was already losing her hair. It was just because it didn't look as full and lovely as usual. :) The new hair cut will probably be tomorrow. Can't wait to see it!
Everyone at school is super understanding and keeps telling Jenny not to worry about her status and her TA work. But this frustrates Jenny, she just wants to know what's going on with her status, insurance, etc. and how it's all going to work out.
Tonight is Ward Council. Jenny is hopeful that she can attend via web-cam, unless she has a doozy of a night like last night.
Yesterday and today were tough. Pray for Jenny to feel better. And Jenny, you keep inspiring us with your strength and positive attitude! :) You remind me of the LDS hymn Carry On (text by Ruth May Fox) . . .
Firm as the mountains around us,
Stalwart and brave we stand
On the rock our fathers planted
For us in this goodly land --
The rock of honor and virtue,
Of faith in the living God.
They raised his banner triumphant --
Over the desert sod . . .
Carry on, carry on, carry on!
- Home Teachers are capable of making wonderful chicken enchiladas. She was so happy to have those delicacies and so pleased to eat them last night.
- She is still holding onto her hair. Hoping for another week or two at least.
- A school colleague came to help her finish filling out her Fellowship application that was due yesterday. Yay! Good news that the application is done.
- Yesterday she received another dose (? please pardon my lack of proper medical jargon knowledge - I'm one of those people who majored in Humanities in college) of platelets and didn't have an allergic reaction this time. Good news! When she's had an allergic reaction in the past she's dealt with hives and needed a ton of Benadryl which, you can imagine, knocks her out.
- Today was the first day the anti-nausea medicine didn't work. Not fun. While the anti-nausea medicine means she can consume food (like the aforementioned chicken enchiladas) it has side-effects of it's own such as making her cold and sluggish. (Did I get that right JR?)
- I also learned that "Acute" in Jenny's diagnosis means the Leukemia came on really suddenly. Her doctor told her a blood test just a couple of months ago would have shown no signs of her current condition.
Tuesday, November 16, 2010
Nicole is a skilled photographer and took several pictures of Jenny's designer room. To complement Ashley's decorations, one of Jenny's friends (was it Rachel?) hung three gorgeous "crystal balls" in front of the window, tied with brown satin ribbon.
Not only are these crystal balls elegant, they also remind Jenny of the film, "Pollyanna," in which Pollyanna talks about the way the sun refracts through her aunt's crystal chandelier to make rainbows in the room--one of the many ways Pollyanna sought and saw the good in every situation. Jenny is certainly an example of having a positive, Pollyanna-ish attitude even in the midst of this trial.
Ashely deftly mixed elements from art and nature to create an inviting space that reminds Jenny and all who visit her of the beauty that surrounds us, the abundance of our lives, and the importance of our faith in the Savior.
The twinkling white lights next to the window give the room a cozy, even magical, feel, making it a little easier to believe in miracles while you're there.
Sue and I were definitely the LEAST decorative elements in the room that night! Nevertheless, we were grateful to spend some time with Jenny and Nicole.
Monday, November 15, 2010
I wanted to secure the chance to talk to her every week and hear her voice.
And I think talking to her this morning did me more good than her (that's pretty classic Reeder, don't you think?)
I found out about everything that first weekend in November via txt messages. I was working an event and she was in the hospital. But, even over texts, my heart was in Virginia. And it has been every day.
I was just telling Jenny that because I'm connected to her through several groups of friends (or rather because I'm connected to several groups of friends BECAUSE of her), that I have a rare chance to see all the things people are trying to do, wanting to do, planning to do.
Is there a girl more loved than Jenny Reeder?
If there is, I do not know her.
SO...on with the update of Day 7 (and we'll see how good my journalism skills are...if I got this all correct).
First of all, Jenny sounds great and that made my heart happy.
So great that when she told me about her steroid treatment (daily pills to make her organs strong). She said there weren't any side effect but that her face is getting puffy. She said people tell her that her face ISN'T getting puffy. And she just wants to say, "Shut up, jerks!" That made me laugh right out loud (so even if her face ISN'T getting puffy...maybe just play along with her...grin).
One good thing about the steroids is that her appetite came back. In fact, yesterday she was randomly craving chicken enchiladas but then Reeder realized she was in Virginia and asked, "Where in the world am I going to find normal chicken enchiladas here?"
There is one Mexican restaurant that she loves but has only had their fajitas. She called a friend who called a friend and was assured this place had good chicken enchiladas. But, they came. And Jenny tried them and...no go.
Happily, her Home Teacher is making some for her and bringing them today.
Tomorrow (Day 8) is a big chemo day that will likely wipe her out. It's a drug she has had before but it's the drug that will likely make her hair fall out. A friend is going to come and give her a cute little pixy cut in preparation. I don't know about you but I think if ANYONE can pull off a new look, it's Reeder. Petite people always can pull of a new look.
She is overwhelmed by the love and prayers and support. But, that's what happens when things like this happen. You find out who YOU really are through the way people are moved into action because of the impact and influence you have on them.
And I for one am REALLY grateful for Jenny's impact and influence on me.
(this picture was taken way too long ago...but it makes me happy.)