Nothing but good news to share here.  My white count is actually above the normal range….I’m bursting with immune response right now.  The first few generations of white cells post-transplant are not as effective as later ones, though, so I still have lots of infection controls in place, but I’ve been cleared to eat well-washed raw fruits and vegetables, and to dead head (but not weed) my garden.  Red counts are lagging but steady.  Platelets are well over transfusion levels and racing towards normalcy.

My wonderful nurse Kim pulled my catheter this morning, so no more tubes hanging from my body….I’m back down to the number of orafices I was born with.  You can’t imagine how great that is.

I’m really looking forward to the weekend at home.  The lack of red cells means that I’m still ridiculously low energy, but I do just fine as long as I can sit and chat with people.  We have a parade of helpers with the kids all weekend, and my sister Suzy arrives Sunday to help out next week.

Life is good these days.  I’m happy as a clam in this incarnation as a slow-moving version of myself.

Love, Jen

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Whew!   Who knew that a stinkin’ CBC readout could cause whoops of joy?  I just found out, my friends, that my white count is 2.9!  I’ve been hovering around 0.1, 0.2…..and then today, it leapt up to 2.9.  Not quite normal, but definitely out of the danger zone.  No more masks!  I’m definitely going to spend some quality time with the kiddos tonight.

This is a much needed lift because last night, I hit the wall.  I’m just done with all of this, the treatments, the baldness, some of the side effects.  I’m just done.  I want to be energetic and pretty again, instead of wrung out and moth-eaten.   But the light at the end of the tunnel looms so much brighter this morning…I can get through.  I’ve heard whispers of getting the weekend “off” ….maybe not having to spend my day in my little clinic room.  So things are looking up, and I wanted to share.

Love, Jen

A few weeks ago, I moved a sullen echinacea plant who’d been moping in the new shade created by a nearby shrub’s growth.   Despite e. purpurea Magnus‘s sunny new spot, rich with compost, he was wilted and droopy with the hour.  Transplant wilt…just too many shocks to the system.

That’s how I feel right now; I think I have transplant wilt.  Monday, Tuesday and Wednesday of this week were awful.  I know me some tired, after 2 babies in two years, and 9 rounds of hard-core chemo.  But the fatigue I felt earlier this week was almost….cellular.  I could barely walk up a flight of stairs, and needed a 20 minute prone rest after taking the single flight to my bedroom.  I was having horrible GI issues and had to balance the crushing fatigue with my personal dignity.  Let’s just say that the calculation didn’t always come out with the same result.  When my doctors and nurses talked about how long I’d feel this way, and whether I’d hit the bottom yet, I was scared.  I really didn’t know that I could make it, whether I had the juice to be in such a dark place for more than a day or two.

But something happened on Wednesday night.  I can’t say for sure what it was, but I felt like I’d been dialed up a few clicks.  I’m still tired and queasy and light headed and honestly, couldn’t make it two doors down the street yesterday with Zach to check out the neighbor’s moving truck.  I had to send Saski back in to get my parents to help me.  Kind of a blow to my independent nature.   And yet, this is sustainable ick.  I know can get through this level of weakness.

Saskia and Jen reading in MasksOne of the hardest parts are the infection controls at home.  Saski is totally on board; she grabs a mask and comes to sit quietly with me.   But Zach won’t wear a mask himself, and doesn’t really want to be around me when I’m wearing a mask, so that’s sort of hard.  Another couple of days and I should be able to be around the kids without masks.  But in the meantime, I miss my snuggles.

There is good news, though.  I have neutrophils!  And monocytes!  Well, maybe a neutrophil and a monocyte is a better characterization.   But after 4 days of 0.0/0.0 on those two blood cell types, I have 0.05/0.02 today.   So, whooo-hoo!

The morning after I moved the echinacea, he’d perked right back up, and is now basking in the sun, getting ready to bloom.

Love, Jen

Just to let you know I’m hanging in there.  Thanks for all of the good thoughts and messages over the past couple of days.  The last 72 hours have been tough, but that’s the game, and I’ll be through it soon enough.

Transplant happens today! It is pretty anticlimactic, actually.  After two weeks of…less than fun….the nurses are just going to re-infuse my stem cells over about an hour.  I’ll hang out for a bit, and than go home to take a nap.  But practicalities notwithstanding, this is a huge turning point.   Even though the high-dose chemo hasn’t finished doing its thing, the rescue cells will be launched; the special forces are on their way.

I’m not feeling very well right now, so I’m going to keep this short, but I want to offer a little prayer here at this moment.  I offer my thanks to God for the wisdom and training of my nurses and doctors, for the advances in medicine and the understanding of the human body that have made a cure a possibility for me.  I offer thanks for the unending support of family and friends in helping me get to this day.  I offer thanks for the resources and circumstances that has made my treatment possible.  I offer thanks for the strength to attack this disease again, despite the fact that the medicine is harsh and difficult to tolerate.

And I ask, God, that this treatment work, giving me the gift of more time on this Earth, with my family and friends.

Amen.

Love, Jen

Today may just be my last day of chemo.  Ever.

That would make me such a happy girl.

Obviously, I have miles of recovery in front of me, still to travel, but being done with this, my 9th round of chemo, and hopefully the very last one for a very long time, is something I want to celebrate.  Maybe say a little whoo-ha for me around 4:30 this afternoon?

This is the highest-dose regimen I’ve been through, but honestly, it doesn’t feel all that different from R-ICE.  The difference is in its effect on my blood counts, which we’ll see over the next couple of days, but for now, I’m getting through it.  Moderately controlled nausea, cack-mouth, general malaise, complete lack of mental focus.

Hanging on.

Love, Jen

For years, I’ve participated on a cooking bulletin board, and for a long time I posted my weekly menu plan on a thread with lots of other weekly menu plans.  We inspired each other and swapped recipes…good, clean fun for the food-obsessed.

These days, I’m spending more time on other cancer blogger sites, and less time on the cooking site.  One such cancer blogger, Open Mike, is on almost the same transplant schedule as me.  It has been nice to check in and see how he is doing.  Today, when I checked his site, I found that he had posted his weekly menu, and the convergence of my web-lives made me smile.

So, in a complete rip-off of Mike’s idea (admits the intellectual property lawyer):

Jen’s Menu, Served Daily for the Week of June 8th

Cocktail of Saline Solution Swish

Amuse of Zoloft and Prilosec

First course:   Dexamethazone, Kytril, Lasix

Main Courses:  Carmustine, Etopaside, Ara-C, Cyclophosphamide

Sides (Effect): Benadryl, Ativan, Dexamethazone, Mesna

Dessert (to be served next week, following reinfusion):  Acyclovoir, Diflucan, Levaquin

Bon appetit!

Really.  I think that in many ways, this is the happiest time of my life.

Obviously, in many ways, things are tough.  When I’m actively in treatment, sometimes I’m in so much discomfort that it really affects my mood.  And sometimes there are dark moments that are the complete opposite of happy.  And the strain that my illness is putting on my family, especially Peter, doesn’t make me happy.

But the big picture is pretty bright.  The lessons of cancer have settled deep into my body, lessons about the meaning of family and self and community.  Lessons about the fleeting nature of life, and how today is life, not just preparation for a richer, thinner, more powerful, more adventurous, less cluttered, less weedy life in the future.  Today is the adventure and the clutter isn’t really hurting a thing.

I’ve moved into my cozy little transplant room, complete with cable TV, Wifi, a private bathroom, a cheerful comforter that used to be in Saski’s room, pre-big girlification, and a wall of family pictures that I had blown up and framed for this experience.  When I was choosing the pictures to enlarge, I had planned to select them from archives in which I was more powerful, thinner, less bald…..times that might have appeared happier to outsiders.  And I was happy then, too; no worries, my friends.  But I wanted to surround myself with pictures that make me grin, and they all seemed to come from the last year.  Zach, in his Halloween bat suit, lounging against our Obama yard sign.  Saski in a close-up, on her first day of school last September.  Me, bald as a bat, with freshly bathed kids perched in my lap for a story.  Peter and I at Herb and Allison’s wedding, feeling sparkly. The kids on the train tracks at Will’s last concert, looking like the album cover for a new acoustic duo.  All the good times we’ve had this year, because my family is so in the now, living for the silly, thrilling, cozy moments that occur so much more often, now that we’re paying attention.

I brought some other pictures, too….a gorgeous family picture (minus Mom, the eternal camerawoman) on the hillside at the farm, October 99, with the leaves in full color, and Peter and Marc, the new boyfriends, included.  One of decades of team photos from the Christmas brunch from the Gray-Lemoine-Lydon constructed family.  And two candids from our wedding, which was without a doubt the beginning of the happiest time of my life.

Yes, this has been a hard year (I guess we’re headed toward the 18-months-since-diagnosis part).  But hard doesn’t also mean miserable.  I worry that the people around me have been feeling the misery more than me, because their lessons, the lessons of loving someone with relapsed cancer, are different, and maybe less conducive to happiness.  I get a lot of attention because of my illness, but Peter, Saski, Zach, Mom, Dad, Ruth, Gary, Suzy, Will, and Suzanne are going through something pretty life-altering, too, and it is my hope that the lessons they are taking out of this experience can help them find their own happiness.

I say it a lot, for many different reasons.  I am a lucky, lucky girl.

You know those catheters I’ve been going on about?  You can see what I’m talking about here if you don’t mind a little gore.

So, I didn’t have to poop in the bedpan.

And, much to the suprise of my doctors and nurses, I collected my full harvest in a single day!  4.3 million cells, a little shy of the 5.0 goal, but my transplant doc is comfortable with the total.  Apparently, it is really unusual for a post-R-CHOP lymphoma patient to pull off this feat, so I’m feeling like a rockstar tonight.

Actually, I’m feeling like ass, but this news did lend a much needed boost, giving me a sense that I my body is strong and is going to get through this.

G’night, all.