After All, the Show Must Go On

You know, I think it's the every day-ness of life that sometimes makes it drudgery. The part about getting up and going through the same motions. For me, that means waking up, taking meds, drinking as much water and gatorade as I can to stay hydrated and flush my kidneys, wrapping my PICC-line in saran wrap to take a shower, freezing when I get out, deciding if it's a sweats day or a real clothes day.

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.

Home again, home again, jiggety jigg

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!

back at it

Jenny has been admitted back into the hospital. Her Neutrophyl count dropped to zero, meaning she has no white blood cells and nothing to stop infection. The good news is hopefully she will only have to be there overnight and can come home after tomorrows chemo treatment. As along as she doesn't have a fever, which she hasn't had in over a month. So keep her in your prayers, and as always calls and (pre-approved)visits are appreciated. We love you Jenny keep those spirtis up and think good white cell growing thoughts!

Yahoo Dooray

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.

Grow!

This image was on the cover of the Economist, 9 October 2010. I love the headline ("Grow, dammit, grow!). Sorry if that's offensive. I think a lot of stuff in my life is offensive right now.

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.

Good News Minute

This just in:

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!

The Grateful Game

Some days you have to play the Grateful Game just to stay on top. First, two things about gratitude from our own dear President Monson:

• 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.

So here goes.

• 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.
  

I know there are things and people I have forgotten. I do, after all, have chemo-brain. But I have felt your love and prayers--you have fed me and covered me and warmed me and delivered me. I am so blessed. And I feel so indebted. And I feel to commit myself to feeding and covering, warming and delivering for the rest of the long life I have ahead of me.

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)

Cancer is a Full-time Job

Who knew? Seriously. It takes everything out of me. Literally. You can imagine what that means.

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.

Chemo, Schmemo

Here is a list of things I am grateful for after a very long day of chemo (try 7 hours):

• 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?!?
  

Cake

Spinal tap: check.

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!

More Ways To Help

This is so much fun to sneak on as a guest blogger again.  Okay, I didn't sneak, I really did ask permission.  :)  I told Jenny when she began blogging again that I was selfishly disappointed because I enjoyed the few times that I was able to check in with her and guest blog on this amazing blog of hers.  But really I am so happy that she is already feeling up to blogging for herself again, because I love hearing her strong spirit in her posts!  Jenny, we love you and appreciate the wisdom and strength you share with us!

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.

Thank you!

The Crystal City Ward Relief Society Compassionate Service Committee

Your Mission, Should You Choose to Accept It...

Yesterday was a much better day, thank you very much. My white blood cell count went up from 2.2 to 2.4 (normal is 6-10. coming: a post about how my life is measured in numbers), I had a lovely afternoon nap, I went to dinner for my roommate's birthday (a real restaurant! I wore real pants not sweats! the public!), and I did yoga. Oh yoga, I love you.

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.

Keep Calm and Carry On

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)

I love that last one. I love the idea that the word perfect means complete, or whole, and that I can be made complete, whole, and entire, through my patience and faith.

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.

By Way of Explanation

Not much to report today, but a visit to the Infectious Disease doctor (follow-up visit from the three infections I had while in the hospital--I'm done with my $1,300 8-day antibiotic--and if I get any fever, chills, or diarrhea, I'm to contact my oncologist and probably be admitted to the hospital for IV antibiotics--pray for me), and the departure of my dear mother (I don't want to talk about it--but she'll be back soon for Christmas).

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.
  

So when people ask me if I'm back to normal, the answer is no. No I'm not. And I don't know if I will be. I'm still so so so tired. I sit around a lot and read or sleep or watch TV. I can't wait for the day when I can catch up on my missed deadlines for articles, or actually work on my dissertation. Or catch up on emails. And thank-you cards.

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!

Good News!

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.

The New Normal

Now that I've been home from the hospital for nearly a week, I'm settling in to what I call "the new normal." Here is my new normal schedule:

• 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.
  

That is my life. I'm settling in. But I'll be honest. Every once in a while, I'll stop and realize how this IS my new normal. It freaks me out. I don't like this normal. But as Dr. G. said today, this is a new normal for now... but it's temporary. There will be another new normal. Thank goodness.

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.
  

Milestones

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.

Love you all! More tomorrow!

And shout-out to Chris Jones in the hospital somewhere in California--be strong, my friend!

there's no place like home

Jenny is home and is very happy to be there, I stopped by yesterday and she seemed so relieved to be out of that hospital room. She modeled some of her many hats that have been given to her and she looked fabulous in all of them. She will be needed daily rides to the hospital for her second round of chemo and treatment starting next week so let us know if you would be willing to drive her occasionally. I for one am jumping at the opportunity to spend some quality time with Jenny Reeder. She has her bone marrow biopsy next Tuesday or Wednesday to see if she is in remission, so keep those prayers coming. We love you Jenny Reeder!

Ladies and Gentlemen, Jenny has left the building

Good News! (Insert JennyReeder happy dance here.) Our cancer-fighting superhero is nestled all snug in her own bed tonight. 

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!