Monday, March 21, 2011

It's Springtime!

Brian Cole made this for me!! It is called "Stem Cell"  Notice the jail cell he made for the stems.  Brilliant!!!  

We made it through the winter folks!  I remembered thinking way back in early December when I started this whole process that I was grateful that I'd be going through this during the winter, and how wonderful it was that I would be coming out of it in the Spring.  Spring is a time of rebirth and growth.  It makes me happy.  And that is just the kind of medicine I need right now.   I need to remember though that Spring means doesn't mean grown.

Mom has been keeping a journal on her calendar of everything we've gone through since starting this journey at the bone marrow clinic in January.  She read it to me today as I was lying on the couch completely exhausted and wondering if this was ever going to end.  After she finished reading off every day for the past two months I thought, WOW, we have been through SO MUCH.  It is really unbelievable.    She's even been noting things like if I've walked for the day, or if I've gotten blood products, or even if I've done a happy dance, or worn a bra (finally put one on on day 8 at the hospital...we saw it as progress....), or felt an interest in playing words with friends.  (She is probably going to write down that I wrote a blog post today, because I haven't felt like doing this in a long time).

So, let's start with the good news.  I am out of the hospital and my mouth sores are all healed.  Hallelujah!!  I haven't been on pain meds since last Friday.  My labs look better than they have looked in a couple of months!!! My absolute neutrophils, a sign of how well my body is engrafting the stem cells, look great, within normal range.  All of my red blood cell markers are normal...meaning I am not anemic...something I have been since starting ICE back in December!!!  My white blood cells are hanging in there....waivering between normal and just barely low.  Platelets are normal and growing in number everyday.  My liver and kidney function are normal.  The clinic has decreased my IV fluid to one bag instead of two, meaning 3-hours less in this clinic everyday.  The best news is that we hear I might start going to every other day starting as early as this Friday!!!

So we are making good improvements.

I need to keep reminding myself of all of these improvements when I start to get down about the things that aren't moving as quickly as I'd like.  Namely I have no energy.  Zip, zero, nada, none.  I sleep all the time and when I am not sleeping I feel like doing nothing else.  I am walking a mile every single day, albeit very slowly.  I've lost 12 pounds since transplant, and while you think this big lady would be jumping for joy, I'd be much happier if it didn't leave me feeling like a shell of a person.  My face is sunken in, dark circles under my eyes, cracked, dry lips, no eyebrows or eyelashes.   I look rough, and not healthy at all.  I started to tear up when I got out of the bath the other day seeing how bad I looked, and Michael told me I looked beautiful.  And I cried and hugged him more.  And then he said you should have seen yourself last week, you look much better than you did then!  haha.

I am not eating very much.  My appetite is really poor, and nausea is ever present.  Mom and Michael are keeping me eating at least some good protein shakes with lots of nutrients supplemented in them.  Michael put a bunch of nuts in my most recent one which was a good idea to get some good protein and fat.  They are bribing me...saying if I drink my shake then they will give me a foot massage.  And that works :)  I am eating bone broths made with love by Pat and Becky whom I am forever grateful for.  Mom meticulously froze in individual portion sizes the food that the chef made for me the week of the transplant, so I am trying to get some of that food down, although solid food is a bit cumbersome and I don't have much interest in it.

So I've had a few pity parties the past couple of days about why me and blah blah blah but I cry it out and then move on.  

On a lighter note...I am typing this at the clinic and in walks my friend who I met when I first got here.  She is a very similar case to me....Hodgkins in the same areas as me, 10 ABVD, remission, and then relapse within 3 months just like me.  She is about 35 days ahead of me and today is her discharge day!! She is looking GREAT and says she feels better than she's felt in as long as she can remember.  I needed to see that encouragement today.  And, I just got my labs back from today and everything looks even better than yesterday.  WBCs, RBCs, hemoglobin, hematocrit, platelets, neutrophils, liver, kidney all within NORMAL range!!  yippie!  So we have hope.  My body will catch up....

And lastly, I never posted about my stay in the hospital, but I wanted to send a bundle of thanks to those of you who made the extra effort to make me feel loved.  To my visitors, you brightened my day, thank you Linda, Michaelle, Becky, Patty, and Karen and Brian.  To all those who e-mailed me, thank you, your letters were read and I hope you forgive me for not writing back.  To Metametrix, Amanda and Mark, Bonnie and Rob, Karen and Brian, Deana and Milburn for sweet gifts to lighten the soul.  To my women's circle for skyping me in, what a bright shining light in my day.  Rin, Chuck and Dawn, your daily check-ins and love, and skyping were so nice and made me feel so loved. I can't believe I lucked out to have such great inlaws.  And to my loving parent's who visited, cared for me, loved me, walked with me, kept me company, bathed me (mom), you are the best.  And last but certainly not least, my dear sweet husband who suffered three overnight stays with me despite the incessant beeping of the pumps, the constant interruptions, and the hourly trips to the bathroom, you are my light, my love.  You worked all day, and stayed with me every night.  You have proved time and time again you are in this with me for the long haul and I sometimes feel like I am the luckiest person on the planet that I found you to walk through life with.  I look forward to happier times when we can frolic and play and live life to the fullest.
Karen and Brian's visit :)

Tuesday, March 15, 2011

Day + 11

Hi all.  Me checking in with you all to let you know I am doing better every day.  I've been trying to get a post in for two days now and I realize I just don't have the focus I need right now to really put into the words I want to use to describe this past weeks experience because it certainly has been on heck of an experience, unlike anything I have ever lived before.  

So what I will leave you with is a mandala picture I worked on this week. It is from a book called Coloring Mandalas by Susanne Fincher and gifted to me by my dear friend Lori.  Susanne explains different archetypal stages of personal growth, and pairs them with mandalas inspired by different cultures.  The one I chose for this week was from Stage 12, Transcendent Ecstasy, in which you experience a shift from chaos to transformative wisdom, a reordering of all that was broken.  This stage is a coming together of all that went before, a time of profound joy, when you feel perfectly in step with the cosmic dance.

...yes, I like this. ... although I can't say I am basking in profound joy as the physicalities of the body are still very present.  But I do feel connected to the cosmic dance.

So I will be discharged from the hospital either tomorrow or Thursday.  And then we keep on keepin' on!!

Friday, March 11, 2011

Eve, checking in!

Misty moisty second night--view from my room.  Not bad!
Here's a big shout out thank you to mom for taking on blog responsibilities this past week.  As you can see, we've been through some stuff, so it was nice of her to keep you informed.  I appreciate all of your e-mails and concerns, and I apologize for not getting back to you sooner (or if at all yet).

So in a nutshell I have to say I am doing as well as can be expected (even better actually). We were prepared with the knowledge that I might be admitted for fevers and mucositis (mouth sores).  And indeed I was.  But what I was not prepared for was having the hospital stay feel like such a blessing.  I have a very comfortable, clean, room with a great view.  The hospital staff is very nice and are really encouraging that I will be over this hard part soon.  Because of the way I've been feeling this past week, I am intensely grateful that I can be here at the hospital and not having to figure all this out at home while still making the 6 am trekks to the clinic for the necessary IVs.
long day...time for rest!
There was a bit of a tough landing here on Tuesday night with vomiting right at shift change.  It took awhile for everyone to get things together and realize that I simply can't swallow hardly anything.  So the had to get all my meds switched over from pills to liquid (still not great) or, even better, IV.  It also took awhile to get the ideal nausea med schedule figured out, but now it is like clockwork, and my team here is awesome.  So nausea is controlled.

It then took us really about until Thursday late-morning for me to get this pain pump thing figured out on dosage, etc.  My goal is to get SOMETHING caloric down, without feeling totally drugged and out of it (I hate that feeling).  I don't mind a little bit of standing pain if it means that I am not zonkered and don't have to eat.

Now, to those nutritionists out there, please plug your ears as what I am about to say will make you cringe.  Believe me, it does me too.  My goal for today is to get 3 Ensures down the gullet.  Wednesday I managed to get one down, and yesterday I had a butterscotch pudding cup and a scoop and a half of (ORGANIC, hahahah) ice cream that Michael brought for me.  Yesterday I even finished an entire glass of water (a first since I have been here).

I know what you are thinking....we have access to all of these healthy shakes and protein powders, etc. And yes, we do, but some nutrients in these things are like pouring battery acid on open wounds.  Mom is bringing a plain protein powder shake today with a frozen banana and we'll see how that goes down (I hope it is yummy).   She's tried different versions and so far we haven't found a winner.

You can imagine my disappointment with all of this food/nutrient issue, when I've been saying from the start that this rebirth period is probably the most important time for good nutrition.  We've even hired a fantastic chef because I felt it is so important.  But what this is teaching me is that I simply have to let go of stressing about this.  Everyone tells me my mouth will be better in 2-5 more days.  And when I can settle into this routine here at the hospital without resistance to or depression or guilt about the food then my life is much happier here.

I am doing vit D dops and am also opening up capsules of vit E and rubbing it into the sores.  My mouth was regime is brings the biggest relief from the pain that last for about 10 minutes.

So I have settled in quite nicely here.  I have found the routine that works for me.  I  am comfortable, and feel well cared for.  Mom and I walked 2/3 of a mile on Wednesday, and a whole mile yesterday (after blood products!!) around the unit yesterday.  Mom also gave me a sponge bath yesterday that felt divine, and we laughed about the rebirth theme again...

Michael has been keeping me company at nights.  He spent the first two nights over night with me, but he was getting no sleep at all because of the constant interruptions, so I insisted he sleep at home last night.  I missed him, but felt the best knowing that he was getting good sleep. And I don't feel alone here.

I had to visitors yesterday...thank you!!!  It was so nice to see friendly faces :)  I am tired though and can't really talk much so the visits were short but sweet.  I appreciate the calls too, but unfortunately I can't talk very well, so it is hard for me to call you back.  But thanks thanks for the thoughts!!

So there you go, all is well.  I am not feeling depressed or anxious or upset.  I am just "being" and that is just fine for right now.  My grandmother has been doing a lot of reiki on me, and I can feel her calming presence.  It is nice.

I always have lots of things dripping into me....see Michael's bed in the background.  
view from the window this morning.

Wednesday, March 9, 2011


Mom is doing this post again today since Evie still isn't up to it herself. Seems like my Day 4 post was a little premature, since it didn't really cover the lowest point after all. After Evie and I returned to her house yesterday and I posted the entry to her blog, we decided to take her temperature (which we had been instructed to do every 4 hours). We had been told to call the clinic if her temperature exceeded 100.5 degrees. So, with the new digital thermometer in mouth, we registered 100.4, 99.6, 99.8, 100.5 and 100.7 all within the space of 5 minutes! Whatever happened to the good old mercury thermometer!! We didn't know what to do, so Evie called Michael. Within an hour or so Michael was home with a fancy electronic thermometer from the lab, which required sticking a wire in the mouth (it was designed to be used with lab instruments). As I left to go home, Evie's temperature was bordering on 100.5 consistently with the new thermometer. Shortly thereafter, it went past 100.5 and Michael called the clinic, and then Evie was admitted to the hospital. 

She has a nice room here at Northside in the special wing where all the bone marrow transplant people stay since it has specially filtered air and cleanliness standards for people with low immunity. It was a rough evening for her with some upchucking and mouth sore pain, but Michael spent the night and she made it through okay. I'm here now and she's feeling better -- her fever dropped to 100.3 but she cannot eat or drink anything, even water, without pain. They just hooked her up to some pain med pump in hopes that she will at least be able to drink and maybe eat some soft food. She has an appetite, just can't endure the pain of eating!!! So she is watching cooking shows on tv to pass the time. I have been enjoying some of the hospital food they bring her -- feel a little guilty eating in front of her, but oh well!

Speaking of food, Evie and Michael had hired a chef to make some special organic, tasty food to help rebuild Evie's strength and to nourish the caregivers (Michael and me). This very talented chef spent Monday and Tuesday preparing all sorts of amazing dishes and storing them in containers in their refrigerator for us all to eat this week. The house was fragrant with delightful smells when we returned from the clinic yesterday. But -- you guessed it! -- Evie won't be eating any of that tasty food for awhile. I brought a salad and pot roast home for Andy to eat yesterday -- boy, was he happy!

No one knows for sure what the timeline is from here, but the best guess so far is that she will be here for  maybe 3 days until her white cell counts start going up. If she is feeling better then, and if she doesn't have a fever, they'll let her out and we will resume the treks each morning to the clinic at 7 a.m. for a seven-hour stay involving blood tests and more fluids.

We count off the days. Next week she will feel much better; the week after even better, a month from today these mouth sores will be just a dream.

Tuesday, March 8, 2011

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.

Saturday, March 5, 2011

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. 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

Friday, March 4, 2011


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.

Thursday, March 3, 2011

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.