The Pits

Mom here, reporting in on Day 4 post transplant, since our dear patient isn’t up to it. She wants everyone to know she is progressing along the path of recovery, but it is without doubt “mind over matter” time. That is because Day 4 is the bottoming out of her neutrophils in preparation for the new stem cells to grow and flourish. This time is associated with a very sore mouth and throat, which makes it very painful to swallow and, along with the underlying nausea, a time of no appetite. She does her best to get her pills (anti-microbials and pain meds) down and some liquids with as many nutrients as possible, but that takes a lot of will power to do.

And she doesn’t feel like doing much of anything at all. With some good drugs that we will pick up today, she will hopefully be able to sleep through this time. Everyone tells us her mouth will be sore for another 3-5 days and then she will be feeling better and better each day. So, we are keeping a positive outlook and enduring this painful time.

The good news is that we were prepared for this. The past month we have bonded with many other patients in the clinic – some further down the path than Evie, some behind her, and we all share experiences. So the patients and the nurses and doctors keep her informed on a daily basis about what to expect, how not to worry, how it will suck for a few days but then will be over. Armed with this knowledge, she is hunkered down waiting for the upside of all this.

So, it’s the pits – literally the low point of the entire experience. It’s also like the bowl of cherry pits – the hard inner part of the cherry that isn’t tasty or edible. But these pits are seeds of new beginnings, like today, Day 4, is for Evie.

Day +1 thoughts

So it is Saturday morning (day +1) and Michael and are are hunkered down in our corner of the bone marrow transplant clinic where we will be for six hours today getting iv fluids. We are on the 10th floor overlooking the skyline. This is where I will be everyday for the next 30 days at least.

Everything up until now has been preparation for this--ICE x 2, catheter placement, cytoxan, nupagen shots and stem cell mobilization, stem cell collection, drug education, pharmacy runs, high-dose chemo, rest day and then transplant. ...following the schedule, making it happen, eyes on the prize...

So now we are here. The day we've been waiting for and I am feeling a little out of control. There are so many unknowns that could happen for me in the coming weeks and I guess I didn't stop to worry about them until just a few minutes ago. Fortunately Michael is here and he let's me get teary and then helps me move the worry from my head.

I feel like I was in the middle of a whirlwind on a specific path and now the winds have died down and we don't have a hundred things on the schedule to check off. The calendar is blank...we play it by ear. We wait to see how my body does with the procedure.

There is a very great chance I'll be admitted to the hospital (95% of people do) for either fever or mucositis. I find fear and anxiety welling up in me surrounding this. ...okay...so I feel it. There you go.

When I get worried I find myself asking a lot of questions. I spoke to a friend today who is 30 days post transplant and she said everything that could have happened, did...fever, mucositis, bladder infection, rash. She stayed in the hospital two weeks. But she said the good thing was that the medical team didn't seem worried, they had it under control. That is what they are there for. And today she is up walking around, out of the hospital, and getting stronger everyday.

Patty is coming over today, she's been coming a lot lately and I feel our work on the energetic level will help me with all of this. And as Adya says - just allow everything to be as it is...

...and then I can exhale

...and then I think of the sweetness of yesterday. Love billowing from every angle. And I realize, everything will be okay. Even if there are bumps in the road.

WBC: 3.2
Hematocrit: 29.9
Platelets: 244
Neutrophils: 2.8
Mucositis: 1 on scale of 10
Temp: 98.7

So here are my thoughts this drizzly Atlanta morn

Rebirth

Just a quick note to let you know that all went well today.  All my sweet little stem cells went in without any complication, and we were out of the hospital and home by 1:30 where we dined on delicious homemade spinach pie and brown rice from my dear dad. Thanks for all of the love you sent today.  It was a good day.  Now time for sleep.

The time is almost here!

Dr. Hartle sent this to me yesterday titled "Stem Cell Art"  Such beauty, it brings tears to my eyes.  

Not much in me to give a great big post, but I wanted to pop in to say I am doing well and we are going along right on schedule for transplant tomorrow.  High-dose chemo went without a hitch, and we all celebrated yesterday with the thought that, universe willing, it will be my last chemotherapy I will ever have to do.

I appreciate so much the outpouring of love I am getting from you all--words cannot describe my gratitude.  Your love comes in so many forms, and I cherish each and every last one of them, from texts, to e-mails, to facebook comments, to phone calls, to re-birthday presents, to feeding us, to meditations, and most importantly daily thoughts, positive energies and prayers for my full recovery.

The high-dose chemotherapy is now in my body and it is working its magic.  We asked it to be here, we welcomed it in to seek out and destroy the errant cancer cells that have found a warm home these past years.  The chemotherapy is also working to eradicate my bone marrow so as there is plenty of room for these beautiful, healthy 4.5 million stem cells to move right in tomorrow and develop into strong and healthy blood cells that will bring me back to a full and vibrant life I fully expect to achieve.

This has certainly been a journey of the mind, body and the spirit.  I have grown exponentially through all of these trials, and have been blown open by the power of love, the power of giving, and our connection to the heartbeat of the universe.

So with that, a big big I LOVE YOU to all you out there reading.

p.s.  everyone says the hardest days are the ones directly after the transplant, so if I am MIA, know that I am here, just recovering.

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.....

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

Our Oregon Trip!

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!