Of worries……

Of anxiety…..

To do whatever I want for the rest of my long life!

Thank you, thank you, thank you.

sigh.

Anyhow, I just would love some hugs or prayers or whatever between now and Wednesday morning, when I should get the thumbs-up from my doc.  Really.  It’s going to be good news.  But still…

tick.         tick.                  tick.                                            tick.

Six loaves of Vermont Sourdough.

Three Sesame Semolina.

Three Fig Pine Nut.

Two Pumpernickle.

Two French Country.

Two Sweet Potato Walnut.

One Whole Wheat Polenta.

And a CLE-HE-HEAR SCA-HA-HA-HAN.

Thank you to everyone who has been sending good mojo and sharing hugs.  The weight of the world is off of my shoulders, and I am flying high.

Ahhhhhhhh.

I’ve put all of them to use over the past two weeks or so, as I approached my first PET scan since the transplant.  Visualizing Dr. Spira giving me the good news.  Keeping busy.  Exercising.  Minimizing googling “post-transplant relapse”.   But yesterday, the day before my appointment, I just didn’t feel like using coping skills.  I just wanted to freak out.  Because I’m 35 years old with two tiny kids and a joyful life and a circle of warm, fun friends and a husband I adore and lots of ideas about a rich and engaged future and I have had two bouts with cancer and been through such crap and done 9 rounds of serious, serious chemo and 28 days of radiation and a f’ing stem cell transplant and lost my hair twice and crapped myself in pain and already am pretty sure I’ll end up with some sort of secondary cancer induced by all of this poisonous treatment in 10 or 20 years, best case, and called in every favor I’ve ever been owed and relied on the kindness and generosity of my friends to get through it and am just starting to give back and I have this nagging cough that won’t go away and I know I’ve fired my two anti-cancer torpedoes and if I relapse now there’s not a lot of hope for a cure and I’ll just spend the rest of my life in some sort of treatment and it is just not fair.

So yesterday I let the crazies win.

My options were to go an a major bender, to Xanex myself into oblivion, to devour mountains of food, to pick up a pack of Marlboro Lights and go for it, or to indulge in some seriously compulsive behavior.  I went with the compulsive behavior, went to the store for 20 pounds of bread flour, and started making sourdough breads.

Right now my countertops are groaning under the weight of loaves rising, starters multiplying, soakers soaking.  Vermont sourdough.  French country boule.  Sweet potato walnut batards.  Whole wheat polenta loaves.  Sesame semolina.  Something with figs….still working on that one.  Rye.  All wild-yeast raised!   There’s a thin coat of flour on every flat surface of the first floor.    It’s nutty.  But seriously, if you have issues, knead some dough.  It works.

Anyhow.  Crazies have won.  I showed up for my scan at 8 am this morning (having fed the starter and taken 4 loaves out of the fridge, where they’ve been retarding overnight), waited for an hour, and then learned that the scan camera was down.  So I’m home, waiting for a call from the radiology practice, twitching like a meth addict, and getting ready to bake.

Anyone want some bread?

–Jen

Basically, there’s nothing to report from Cancerland.  I hear it is nice there, this time of year, but I’m not looking to go back any time soon.

I have a scan in late September, and I’ll probably post about that, but for now, the cancer fight is won, and accordingly, the blog is likely to be a bit quiet.

Thanks for reading, all these long months, and for posting comments, sending email, and sending positive energy my way.    Cancer is a team sport, and I am incredibly grateful for all of you choosing to be on my team.

Love, Jen

Done.

I have officially completed the treatment protocol.

I got my gold star today…my counts are steady and climbing, my energy is slowly returning, and I feel good.   I’ve been sent back to my regular oncologist for normal remission monitoring.  I’m not a transplant patient anymore; now I am a survivor.

Yesterday included a stop at the transplant clinic, where I learned that my white count is a little low, my red count is still low but moving in the right direction, and that I have platelets to spare.  All is well.  I was dismissed until my next visit, the all-important 30-day checkup, after which all of my infection and behavior controls are lifted, and I am officially discharged from the transplant program.

Life I love you.

I am still tired, but I’m getting a handle on the ebb and flow of energy through the day.  And I’m doing a lot…today, for example, I got up with the kids and got them fed, dressed and dropped at Sewusen’s.  I went to the farmer’s market for the first tomatoes of the season (although, they don’t have that intoxicating scent yet…might be a few weeks away, still), did two loads of laundry, baked homemade burger buns, spent some time with Ginna, picked up the kids, and went to Pizza Thursday, our block’s weekly outdoor pizza-beer-and-juice-box soiree.  Yes, I watched a few Cold Case reruns, and crashed at the end of the pizza party, but for a girl 24 days off a stem cell transplant, I’m doing just fine.

Right now I’m dappled and drowsy and ready for sleep, but it was time for an update, and it feels so good to have good news.

Love you all-

Jen

* Last night, as I was trying to fall asleep, I was contemplating the 59th Street Bridge Song, and got all caught up in the line “Got no deeds to do, no promises to keep” and how that state was making Paul Simon feel groovy, while a generation or so earlier, it was the state of having promises to keep that broke the spell of the frozen woods, taught by high school American Lit teachers as a symbol of suicidal ideation,  for Robert Frost.  Interesting.  What does it all mean?

Luckily Peter and my sister Suzy, the angelic helper o’ the week, have been really patient with me, stepping right in to help when things go south.  But I’m frustrated.  I feel good enough to have “big” ideas about what I want to do in a day but not enough gas in the tank to make it happen.  It is normal, expected, la la la, but still, frustrating as hell when you are in the middle of something and have to bail.  And these somethings are pretty low-key….making the bed, picking up new flip-flops for the kids, prepping dinner.   I watch a lot of Cold Case these days.  A lot.

Tomorrow, it is back to the clinic after two days off, so we’ll see where my red cell count is.  Red cells are one of the keys to overcoming fatigue.  I’m also hoping to be cleared for restaurants and driving, but, I don’t know.  I’m not sure I should be driving yet.  Hrm.  Maybe I’ll just be cleared for Peter to drive me to a restaurant.

My kingdom for a glass of really cold sauvignon blanc.

Love, Jen

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

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

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.

One 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

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

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

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!

Posted in Updates ]]> http://cancerfight.wordpress.com/2009/06/10/weekly-menu/feed/ 4 jphilg http://cancerfight.wordpress.com/2009/06/09/the-happiest-time-of-my-life/ http://cancerfight.wordpress.com/2009/06/09/the-happiest-time-of-my-life/#comments Tue, 09 Jun 2009 14:46:08 +0000 jphilg http://cancerfight.wordpress.com/?p=160 ]]> 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.

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.

This was supposed to be the easy part.

These first few days of the transplant protocol have been a little tougher than I expected.  The ugly truth:  I’m having a fair amount of pain.  The Neupogen shots are doing exactly what they are supposed to be doing, but the downside is that my over-filled bone cavities are aching.  Deep-seated waves of pain in my shoulder blades and tailbone wash over me, not all the time, but when they do, there’s not much I can do.  Tylenol helps, a heating pad helps, but mostly I just assume the fetal position and try to go to my happy place.

Yesterday I had my catheter surgery, which is adding to the fun.  Somehow my selective memory had convinced me that having two catheters placed would be no big deal…and it was no big deal, from a medical perspective.  But from a pain-management perspective, it isn’t so simple.  I’m in a pretty bad way, mostly on the right-hand side where the larger Quinlon catheter was implanted.  I declined the new Vicodin script from my surgeon, because I had some at home, and I also had some Dilaudid, both from past surgeries.  Unfortunately, there were only two Vicodin pills left, gone by early afternoon, and the Dilaudid is just too strong.  It is a morphine derivative, and while it gets me high as a kite, I have crazy dreams and disturbed sleep and honestly, it doesn’t do as good a job with the pain as Vicodin.  So I screwed that one up.

I’m attempting today on Tylenol, alone.  We’ll see how that goes.  I’m leaving in an hour to start the cell harvest process, so I’ll just lay around in a hospital bed all day.  Hoping for an efficient harvest, maybe just a day or two on the machine rather than the four days allotted to me.  As soon as I hit the magic number of cells, I stop taking the Neupogen (ahhh!) and get the Quinlon catheter pulled out (whee!).

Despite my bitching and moaning, I’m feeling very grateful for the incredible medical staff that is taking care of me.  The nurses in the transplant clinic, the recovery room nurses, the apheresis nurses….they’ve all brought an unexpected level of humor, sunny disposition, and incredible professionalism and problem-solving ability to this otherwise crap week.  And in the blessing-counting category, I’m also incredibly grateful to my friends Mindy and Addie, both of whom are having pretty crap weeks themselves, for the last-minute shuttling around they’ve done at all hours of the day, to minimize the load (as if!) on Peter.

Again.  I’m a lucky girl.

Off to apheresis.  You should all be hoping I don’t have to poop in a bedpan today, because you *know* I’ll write about it here if I do.

Oversharing is now over for the day.

Love, Jen