Monday, February 28, 2011

Life is a Cosmic Joke


These are the words of my very wise grandmother.  We giggle about them often when life throws us curve balls.  Well let me explain to you how we got to laughing this day.  (I haven't posted in awhile, so I am picking up where I left off in my previous post.)

I left you, sleepless, but determined to get some more stem cells.  I had collected 0.7 million and I needed at least 2M for the transplant, and ideally 5M.  I had done energy work with Patty and Mary and taken a very expensive shot to help make this happen.  I was very hopeful.

So mom picks me up and we head to the hospital for another round with the machine.  My bones had stopped hurting (had only really hurt the first morning of my collection).  I get hooked up and cozy for the 4 hour event when in walks the doctor.  He looks at my chart and mentions something under his breath to the nurse, and then left.  So I start asking questions! I've learned it is not uncommon for Hodgkins patients to take 2-3 days to get all the stem cells we need because of all the chemo we've been through.  But I didn't realize that some fail to mobilize the first time around, and in fact this could be a prognostic factor in overall survival rate.

I got it out of the nurse that the doctor saw my progress and said that if I didn't get as much or more today then we will postpone the collection, give my body a break and resume again in 7 days where I would start the twice daily dose of shots again.  Which means at least 12-14 more days ...  my... face... went... pale.  The very thought of postponing this any further was utterly unsettling.    Mom had gone to the bathroom during my interrogation, and when she walked back to my chair she saw how I'd lost my color, my sparkle.  And so I told her what I learned...and I saw the pain jolt through her body too.  And we looked at each other, held each others hands and just kept telling ourselves that the path unfolds as it should...it has been this way so far, why stop now?

So I had one more hour of collection and then we went home.  As I was packing up my belongings, I honed in on a quote on the curtain around my chair..."be gentle with yourself"  aaaahhh, yes, be gentle. be gentle. be gentle. be gentle. be gentle. be gentle with yourself.

At home we had 3 hours to wait until we heard the count from the nurse.  It was a LONG three hours.  I hadn't slept the night before, but I couldn't settle enough to sleep.  I was feeling the yuck from all of these drugs. I had trouble concentrating on things and I was trying not to stress, but was a nervous little wreck, and then release, and the nervous wreck...the release...a cycle.

I got out my Mandala coloring book and colored, and that was about what my brain could handle at the moment.  Bright beautiful colors to calm the soul.  And then the mailman came and delivered a book a dear friend sent to me.  It was a comedy and mom I and read the first chapter aloud together.  I was laughing!! It was a very welcome distraction and perfect timing.

...and then back to waiting....it was an even longer wait than the day before, and in my past experience the longer I've had to wait for news the worse it was--usually because the doctors had to talk amongst themselves as what to do next....so you can see where my brain was going with each passing minute.

The phone finally rings, I pick up on the first ring, and immediately I can tell by the "Eve?"  that it good news.  Christine, the awesome nurse who I had for collection called to say that not only did I get at least 0.7M, I got 3.8 M totaling a whopping 4.5 MILLION stem cells!!!

WHAT a roller coaster ride that day turned out to be.  I went from deep worry to incredible ecstasy within the space of a couple of a couple of words exchanged.  GOOD news feels SO GOOD TO HEAR!!!  I immediately began crying, and laughing, and thanking her, and my bones, and it was a big mush of emotions---that had to get it together just enough to hear the final drug instructions from the nurse for the weekend.

So I hung up the phone, mom and I cheered, high-fived, and I totally broke down crying, a deep sobbing cry from the depths of my soul.  Carthasis.  I had to move that energy.  And I did, and mom so lovingly, tenderly held the space for me to do it.  It was a very sweet moment.  And then tears turned to laughter--a deep laughter, as we channeled in my dear grandmother hearing her say  "Life is a Cosmic Joke!!!" Here we were...if we had never known about the possibility of postponement we wouldn't have endured those several hours of torture waiting for the results.  But if I didn't know about that, I would never had felt as good as I felt at that moment.  I was high, happier than I had been in awhile.  So which would I choose if I had to do it again....?  Not sure if I could choose anyway....

4.5 million stemmies baby!! Means we can do the transplant as scheduled, I should recover faster since I have more cells to start with, and a good mobilization bodes well for a successful transplant.

Now...lets just get through this high-dose chemo.....

Friday, February 18, 2011

week in review


It is 4 AM and I am wide awake...so what better a time to write a post!

I really need to update everyday as so many little gems show themselves each day and I never seem to capture them if I wait.   But I do want to do a recap of the week to keep the stem-cell process journaled, and also to give you an update as to where we are in the process.  It is late, and I am drugged, so please forgive the disjointedness.... :)

Sunday--platelets

Monday--day off!  Valentines Day! Mom delivered groceries from Whole Foods!  She is amazing, have I mentioned that before?  I am learning how to ask for what I need, as being home-bound, and car-forbidden makes you dependent.  I spent the day mostly on the couch. Michael cooked dinner (with delicious homemade bread from Pat!) and bought me beautiful flowers, and came to bed with me at 8:30 when I simply couldn't keep my eyes open any longer.  He IS love.  And has given up so much for me.  I hope to spoil him to death one day soon.

Tuesday--blood work revealed severe anemia, which was no surprise after a 12-hour nights sleep and I still didn't want to get out of bed...So I got my first red blood cell transfusion, also without a hitch.  I also met a new friend...a hodgkins patient who's story mirrors mine in a lot of ways.  She is 18 days post-transplant and doing better each day.  It was so nice to connect with her, and see someone on the other side of this.  Mom also got to meet her mother, and they could share experiences there too.

Blood-work also revealed that my stem cells were no where near being ready for harvest.  This was a bit of a disappointment, but I was relieved when the nurses said that Hodgkins patients took longer to mobilize because of all the chemo we've done.  So they told us to come back on Thursday to check again, and realistically, it might not even be until Friday or Saturday that we can collect.

Wednesday--feeling BETTER, finally!! Amazing what a few red blood cells can do!  I called into grand rounds at work, and that was a nice distraction.  I am SO so so grateful for those who donated blood.  I have donated regularly through out my adult life, but I realize now, it wasn't often enough.  And, I never donated platelets.  I knew blood donation was important, that's why I did it, but I would have done it more often if I had really known the impact.  It is too bad that it takes a personal experience like this to realize such an important thing.  I can never give blood again, but I hope to raise awareness to others.  I am a believer!!  What an easy way to save lives.

I was thinking a lot about my dear sister-in-law, Dawn that day.  She is such a fighter and was in chemo that day! She is almost done with her several month struggle against triple-negative breast cancer.  She is on the home stretch and I am SO proud of her for her strength, her positivity, her courage, and the beautiful heart in her.  She is awesome and I am sending her so much love.  I can't wait until the two of us are romping around in the woods together, laughing, and putting these chemo memories behind us.

Thursday--WE have Stem Cells Baby!!!  And I could tell my bones were working hard for them!  I hadn't had bone pain until I jumped up out of bed Thursday morning and almost fell flat on my face from the pain in my pelvis!!  So those little guys are working, and I thank you.

The collection went without a hitch, it wasn't painful at all.  Mom donated platelets in the chair right across from me!  We joke about how fun our ladies day out was!! haha.  She was such a trooper!! It was her first blood donation, and she did it!!

A couple of hours later the lab called and said that we've only collected 0.7 million, with the goal being 2-5 million cells.  Because I was under 1 million on the first collection I have to take another drug called Mozabil.  Side effects include....nausea, diarrhea, and insomnia, and yep folks, I got 'em.  But, if it means I will get enough stem cells for transplant to save my life, well so be it. I am grateful!!  It was a bit of a wild goose chase to track down this drug in Atlanta rush-hour traffic, but I've got a stellar healthcare team that knew I needed this tonight.  Amazing people.  I realized later that part of the reason it was so hard to come by is that it is $6500 per SHOT!!!  And I might have to have 2 more!  yikes!

Patty and Mary came over for the second time this week.  Our work is feeling extremely sacred and powerful, and I LOVE those women dearly.

So that puts us to now...I did sleep for a few hours tonight.  I am waking up every hour with hot flashes, this has been going on for over a month now, so I am getting used to that.  But I guess the Mozabil put me over the line with the sleep disturbances...

It is 5 AM now.  In an hour I wake Michael up to give me a double dose of the nupagen, and mom will be here at 7 to pick me up to take me to the clinic.  Wish us luck for more stemmies!!

Good night and much love!!
Evie

Monday, February 14, 2011

Our Oregon Trip!

video

These pictures are from our trip we took the end of January, just before the beginning of this bone marrow transplant process that started February 3rd.    The write-up below is from the photo book we've put together chronicling our journey.

Pre Lockdown Trip
Oregon bound, what??  Yep folks, that’s how we roll! J We’ve been expecting a quarantine period ever since we decided to go forward with the high-dose chemotherapy and stem-cell transplant, but it wasn’t until two weeks before it all started that we found out that quarantine would be for 3 months—way longer than we expected!! So what have these two travel-hungry, nature-seeking, adventure-loving people decided to do to make the most out of the time left?  We go for a trip!! 

The question was, where to go?  Eve’s passport had expired, so that ruled out any international travel.  It was snowy in much of the country, which just sounded too cold. We’d been to California recently, so that left us with either the dry New Mexico desert or the lush, green Oregon.    We checked our sky miles and found round trip tickets to Portland OR for the cheapest possible miles!  And SO we booked it!   Oh yeah, and then got permission to go and HAVE FUN from Eve’s oncologist, her bone marrow transplant specialist, and her naturopathic physician. 

Eve immediately contacted her dear friend Sarah Lopath who she met in Oregon 15 years ago and “Lopes” proved to be the best travel agent we could have hoped for!  A week later we were on the plane!  Eve, donned her mask….and we set out with determination to eek out every bit of fun to be had. 

…as you will see we were successful!

Sunday, February 13, 2011

Platelets (with updates!)

I am here at the doctor today to check my counts.  They were low on Friday.  And we just found out they are even lower today.  I am trying not to worry...it is amazing where my brain goes.  I wish there was someone here I could talk to and ask if this is normal even though I am taking nupagen?  My bones aren't hurting like everyone said they would, and my counts are still low...white blood cells, 0.3 where normal is 4.8-10.8.  But it is known that the chemo I got  last Friday causes the lowest counts 7-10 days after...which is now...so it is probably all fine.  I just never noticed before because we weren't monitoring my blood everyday.

But they say I need platelets today.  So now we are waiting for Atlanta Blood Services to drop off platelets for transfusion.  I am scared.  I have never received blood products before. But my platelets are 17,000 when normal is 150,000.

The patient next to me just got platelets and now he is feeling some reaction and the nurses are paying him attention.  I can't take Benedryl and they don't have an alternative.  If I have a reaction they are going to have to shoot me with hydrocortisone.

But, Michael is here with me.  He helps keep me grounded.  We are working on our photo book from our trip to Oregon.  That makes me happy.

Please send your love and most importantly your strength today.  I know you will, you always do.

p.s  things you learn around here...take your hat off and let your ears breathe before they take your temperature from your ear-drum.  If not, they freak out when the thermometer reads 99.4!  I almost got antibiotics again...but I let my ears breathe and it came down to 97.9.  ... sheesh...

UPDATE:
I have successfully received my first bag of donor platelets!  I am so very grateful for whoever was kind enough to spend the time to donate these.  The kindness of strangers is pretty amazing.   Secondly, I did not have a reaction!!  And I was spared having to get benedryl OR hydrocortisone!  And thirdly, I want to thank Skype for getting me connected with my dear friend Dawn who called in just as the platelets were just beginning to go in.  She was there for me with love and support and strength...I asked and she gave.  And it has been like that since day one.  Dawn has always always been there on my rough days, just when I need her most.  Thank you Dawn.  And finally, my women's circle Skyped me in!!!!  AHHH!!  How cool is that??  They put my little computer face head in the circle and I got to be there for check-in :)  All while sitting here in the infusion center with platelets bringing me life.  I just love those women and are so grateful for them!

So we are done.  Time to pack up the computer and enjoy the rest of this beautiful sunny day!

Love you all!

UPDATE 2:
On our way out of the infusion center I ran into a nurse practitioner.  Now was my chance to ask about the low blood counts and if it was normal.  She calmed my fears and said yes, don't worry.  It takes time for the cells to come back after chemo even with the nupagen.  So okay...exhale...and I did, and Michael and I came home, made a healthy and tasty lunch and went out for a long walk to enjoy this sunny 65 degree weather.  :)

Friday, February 11, 2011

Quick Update

Photo by audi_insperation
 Hi All, me here just to say I am doing well. Lockdown is taking some getting used to, but it is all part of the process. Right now I am feeling on the upside of the chemo a week ago :) Still a bit ADD and fatigued, but not sick. Blood counts are down, but I am doing shots to stimulate my bones to produce. I love my bones. Thank you for working so hard for me :) We know you will work hard enough to get my counts up high enough to start the stem cell collection next week.

So we are going through the motions. Mom and I are spending a lot of time together but it hasn't been bad as we've been keeping busy with walks, cooking yummy food, reading, meditations, massages, and getting my house organized! Oh, and naps...did I mention that? haha. Lockdown is hard for this roaming soul, but it will be a good practice on moving inward.

So there you have it! One foot in front of the other and trying to live in the moment.

YOU can save lives!!

Fight cancer while watching a movie! Please help save my life and peoples lives like me who are receiving a bone marrow transplant with your generous donation of platelets or blood. There is a critical shortage and your donation will be a great help towards successful recoveries of blood cancer patients! Atlanta Blood Services supplies my clinic, but volunteer anywhere to make sure there is enough to go around!

Platelets are of highest demand for blood cancer patients and volunteers can donate every 7 days up to 24 times a year!

Saturday, February 5, 2011

the good things

The things I hope to always remember...

I was lying on the couch last night after a really rough day and Michael comes and cradles me in his lap. We just lie there, lights almost out, no music on, no tv on. Just us. Him holding me, me feeing his breath, comforting, and loving. I know he is with me for this long haul, he is my rock, my best friend, one of the best things that has ever happened to me. He knew that we needed no words, we just needed to be there in the arms of each other, feeling our hearts beat. He knew I needed to be held up in his arms, he can give me strength.

After awhile my parent's call to check on us with such love. They let me cry, without rescue. I get to talk to dad for awhile and he shares with me wonderful things that get my mind off the day. We say our loving goodnights and I make my way to bed.

It was early still, so Michael was up and around making food for us for the weekend. I put on Adyashanti's meditation CD which has become such a source of strength for me even though I fade in and out of listening. In my veil between the worlds of sleep and wakefulness I have these amazing sensations of being cradled by loving hands. It was an extension of my meditation with Patty and Mary the night before where we did some amazing energy work and I truly felt the arms of many, of us, of you, of the divine, cradling us. It was incredibly powerful and also a source of strength.

So that is how I drifted off to sleep, cradled in love, with a sense of protection and hopefulness.

And that is how I want to remember yesterday...not the ins and outs of yesterday...which were...

I had begun to notice the night before that my heart kept fluttering when I sat in certain positions. From my previous experience being awake during my port procedure a year and a half ago, I remembered that if the catheter was in too far that it would cause heart arrhythmia's. So this was my concern that I brought to the chemo nurses attention yesterday morning. So began the day where mom and I toured 9 rooms of Northside Hospital between x-rays, EKGs, admissions for surgery, and then surgery to correct the catheter that was too far into my heart. I couldn't go under sedation for this procedure since I had eaten, so I bit the bullet and went under the knife with an Ativan under my tongue. Needless to say, the procedure was extremely painful--going into a fresh wound and all with a whole lot of tugging and pushing and pulling, but I had the best team of nurses and doctor's there for me. It was incredible. The one nurse that was by my side every step of the way...I'll never ever forget him. He let me squeeze his hand so hard I am sure I bruised it. They had complications because they had to put this port on my left side (they normally do the right because it is the straightest shot, but I already have a port on my right side). So in correcting the problem, they had to bend the catheter in newly damaged tissue, which was inflamed already. Because of the complication, and my obvious scared reaction they decided to give something to me to help calm me down, which made things better. Finally they got it, and in the nick of time...because we had to be back for chemo!

As you know I already had to postpone chemo one day because of the benedryl reaction, and I was NOT interested in postponing another day. AT ALL. I wanted to get the show on the road! There was a bit of a flexing muscles show between the nurses and the pharmacist. The doctor was fine with it. I got agitated and tearful...I think that melted a heart a bit. So it all came down to ... if I could be back by 2:00pm, they'd consider it. And, if there were some real reason I needed to postpone, I would have. So by gosh, my mom and I high tailed it all over that hospital. She even took me by wheel chair back to the chemo place after surgery promising that she'd bring it back (we didn't want to wait for someone to haul me over there). And we made it back by 1:45!! My mom is totally awesome. Have I mentioned this before?? :)

So they hooked me up to the pre-meds, then the chemo and we left the hospital at 5 pm, 10 hours after we got there.

I felt pretty terrible by the time I left the hospital. Nausea, head fog. I got side-tracked before I could even count the number of drugs they put in my body yesterday. But I was home, and I figure I have gotten off to a rocky start, but there will be rocky times during this, and we see that I still make it out okay. If I have times like my night last night, then it will all be okay.

I slept well last night and have been feeling much better today. I met a new friend at the transplant center today and she is a week post transplant with the best attitude. She looks great, and says even though she's had her share of hurdles, she is doing better each day. What an inspiration!!

SO in deep deep appreciation to you all for your cradling hands that comfort me as I drift off to sleep. I love you!!

(how do you like my fat, red little steroid face??, Oh, I just love it.)

Thursday, February 3, 2011

Two days in...


and I am still here! But, there have been some bumps along the road.

New catheter was placed yesterday, with more conscious memory of the whole thing than I'd hoped for (the nurses too). But it is done, and I am hardly traumatized at all (I am getting tough!!). I just let out a little yell when he pushed the thing through my chest cavity...So success! I am feeling the usual pain of surgery again, and last night brought back memories of nights after surgery...Michael helping me get in and out of bed, getting me pain meds, comforting me sweetly when I jolt awake from some nightmare. He is so amazing, I can't imagine having a better husband, really I feel like won the lottery finding him. I just feel sorry for him that he doesn't get much sleep. And, it is sad, we were talking last night and couldn't recall how many nights we've had like this anymore...We are getting good at just dealing with it, and not bringing the emotion with it. So that is good--progress!

So today, mom, my excellent, most awesome daytime caregiver, comes and gets me at 7AM for our first chemo appointment. All goes smoothly to start, they hook me up to IV fluids, give me IV anti-nausea meds, and steroids. Just when the nurse practitioner walked up to check on me, the infusion nurse comes in and pushes a syringe of benedryl in my line. Immediately I begin to feel really weird, my heart starts racing, I get really dizzy and have to hold my head because I feel like it is going to explode, or my eyes will bug out, or I will let out screams of panic, tear off my IVs and take off running through the hallways. I could barely talk, and my words sounded garbled. And then I started uncontrollably shivering all over my body and was freezing cold. It was really really scary. Fortunately the team of nurses there are right on top of things, the nurse practitioner held my hand, my mom came by me and put her hands on my shoulder. She could relate as this type of adverse drug reaction happened to her with novocaine at the dentist. I remembered just thinking to breathe this out, breathe this out. So I would close my eyes and take deep breaths and imagine I was on a sunny beach. I kept being ripped away from that beach in fear, but came back to it, and the breath. Meanwhile the nurses are putting oxygen on me, doing and EKG, and taking my temperature and blood pressure (159/99)!! and then give me some IV Ativan. That also helped me come out of this scary time. And now it is all over my chart says all over it not to give me IV benedryl ever again...

The bad news though is that I find out in the middle of all this that they also worry about my reaction being a display of a systemic infection. If there were a bacterial infection in my line, they could have pushed it into the blood stream with the benedryl dose. The onset of symptoms can be just as fast, which is partly why I have to have a 24/7 caregiver. (I couldn't have driven myself anywhere during that). They kept taking my temperature and it went from 98.4 to 98.9 to 99.7 even though I was shivering so much. They said shivering was a sign of infection. SO, they hooked me up pronto to IV antibiotics just in case. They took blood to culture, but that won't be ready for 48 hours.

So needless to say, they didn't do chemo on me today. I had a day of lots of drugs, just no chemo. :( I was pretty bummed out, feeling depressed because the last thing I wanted to do was create such a dramatic scene on my first day here. I also didn't want to get off schedule. But none of this can be helped. I just need to be grateful that that horrible feeling DIDN'T last and I didn't need to be admitted to the hospital. They are taking precautions by waiting because if it is an infection, the last thing I need is chemo to hurt my immunity. So I trust these nurses and doctors and go with the flow.

So I moved out of the scary part, it did end. :)

Mom and I spent a bit of time de-stressing and reminding ourselves that this will just all be as it is, and it will be perfect. Everything will be OK, right mom!? It is okay that the schedule is off, it is okay that I took all these extra drugs for nothing (or maybe not if it was an infection!). Then, I dig out my ipod and listen to Adayshanti's Meditation CD on "let everything be as it is" and I drift in an out of drug induced sleep haze with his calm voice in the background.

And then my drips are done, and we go home! Mom is here with me now--babysitting day two. Yesterday we tackled laundry, today Mom is cleaning up the kitchen disaster leftover from 3 days with a clogged sink (Michael finally got it fixed this morning after a late night with a hired plumber...) So she is busy-bodying herself while I lie on the sofa still feeling like I got chemo, but didn't...makes you realize how much these other drugs can make you feel like poo too...

So I am good. I feel proud of myself for not freaking out and causing a scene...I was so very on the verge of having a panic attack, but I talked myself down. Well, I guess I did cause a scene just from all of the medical attention, but I didn't cry (I think there was one tear..). I just breathed, in and out, in and out. And closed my eyes and held on. And I made it through the other side.

Tuesday, February 1, 2011

P.S.

It is raining really hard right now in Georgia.  I checked the weather and there is 100% chance of heavy rain tonight.  I seem to have noticed that rain seems to be surrounding my heavy experiences.  I like that just fine...kind of comforting.  It gives my tears some company :)  And it washes over me...

Such love

I am in tears reading this post from my Aunt Patty.  She has been a pillar of strength these trying months and I couldn't feel more lucky.  So here we go!  Tomorrow starts the ctrl-alt-delete!  Here's to reprogramming!

http://patriciabralley.blogspot.com/2011/02/stem-cell-evie.html

there is a crack In everything...that's how the light gets in


Okay, this is just too much.  I've been reading Rob Brezsny's Astrology Newsletter each week when it arrives in my e-mail.  Time and time again I am amazed at how his words fit with what I am going through at the moment.  Now, I realize that it is just great advice that most anyone can benefit from reading, but it is always nice how when I read the horoscope for Virgo, it fits...

Anyway, I get it today, and here are his words:

VIRGO (Aug. 23-Sept. 22): In Leonard Cohen's song "Anthem," he sings
"There is a crack in everything / That's how the light gets in." From what
I can tell, Virgo, the week ahead will be one of the best times all year for
welcoming the light that comes through the cracks. In fact, I urge you to
consider widening the cracks a little -- maybe even splitting open a few
new cracks -- so that the wildly healing light can pour down on you in
profusion.


I am a huge Leonard Cohen fan (his concert is where Michael proposed to me).  And I have often thought of these words during this journey.  But to read this today, on the eve of the biggest hurdle of my life so far...brings tears to my eyes.   Thank you Rob!