The Road Back

I’m bedridden.

I haven’t left my bed (except for bathroom, doctor’s visits and 4 or 5 attempts to go downstairs and watch TV with the kids and friends) in months, which is something I never expected to live through.

It’s very odd to be trapped in this way.  My legs are both so numb from the toes all the way up to my hips that walking is very difficult (and I have the bruises from several falls to prove it!)  The numbness —also known as Neuropathy — is terrifying because I’m not sure if it will eventually go away, or if I’ll have it forever.  None of my nurses or doctors seems as worried about it as I am, so I take that as a good sign…

I’m also trapped by exhaustion.  Yes, sleeping for 22 hours a day STILL leaves me with a huge energy suck of exhaustion.  When I walk to the stairs and maneuver myself down them on my bottom, one step at a time, I’m ready for a 2-hour nap by the time I reach the last step.

Coming back up, I’ve graduated from crawling back up on hands and knees to walking up, one step at a time, with my cane, and I’m damned proud of that.  But by the time I get to the top step I’m ready to plotz!

Recovery takes time, I just wasn’t prepared for how MUCH time it is taking.

When my doctor used the word, “Remission,” I thought that meant that I’d be back to ‘normal’ immediately.  But I’m not, and I won’t be anywhere near my old self (because, after all, WHAT IS NORMAL?) for months.  I haven’t set goals for myself because this is such new territory for me that I have no idea of the time frame for any of it.

All I know is that I’m exhausted, in pain, and my balance is for shit.  For months I was dizzy just being upright, which is the main reason I hadn’t been blogging.  But now I’m feeling strong enough to commit to blogging about my Lymphoma recovery.

Every day I work on my stamina and balance.  I walk to the bathroom at least 10 times a day (TMI?), and I practice just STANDING next to my bed to help me feel more confident in my strength.

Thank you so much for coming along with me on this adventure so far.  I look forward to the day when I can run up and down stairs again, and RIDE MY BIKE around Lake Phalen.

A girl can dream!

Final of Four

I’m back in the hospital, and if all goes as planned this will be the FINAL TIME for chemo!

I’ve been through / will go through several bags of chemo drugs; Rituxan, ifosfamide, etoposide, cytarabine and I’m also getting “premeds” which counter the bad effects of the chemo; Mesna (to protect my bladder) and special Dexemethesone eyedrops to protect my eyes.

So many drugs, so little time.

As generally happens, the first few days of a chemo admission feel pretty darned good; I’m getting fluids, drugs and food at regular intervals, and flying high from my ‘resting days’ when my blood counts and platelets have to reach a certain point before I’m even ALLOWED to return for more chemo.  These days are as good as I ever feel during this whole cancer adventure.

After 2 or 3 days into a Chemo Admission, though, I’ll start feeling it all over; I’ll be exhausted, in pain in odd places and generally in a bad mood.  (Just like usual…)

By the time I’m ready to be discharged, I’m a mess.  Exhausted, dizzy, light headed and SO ready to get the hell out of Dodge!  And of course, THAT’S when the exit process of this beaurocracy kicks into gear and we can add another couple of hours for a parade of ‘sign off’ folks to come and see me and see that I’m okay, and they can let me go.

I’ve only been in a day and already I’m anticipating my frustration at the exit process.  Now THAT is some high dose Dex working right there.

I’ll be home in time for Thanks giving, but I definitely won’t be cooking.  I’m basing the prediction on how I’ll be feeling on my reaction to my second chemo round (which is very similar to my current round, drug wise) and the fact that my last day here (Tuesday) I’ll be getting an interthecal, and we KNOW how I love getting that tiny needle up my spine to delivery MORE chemo.  (That generally sets me back for more than a day, I’m supposed to lay flat on my back to avoid spinal headaches.)

Max comes home on Wednesday and will be having early dinner on Thursday with his oldest friend and their family, then he’ll return chez Landy-Modesitt for an evening Thanksgiving dinner with us.  This is new for us, usually we eat mid-afternoon, but we’re changing it up this year.

Andy’s the chef, and since I’m in the hospital they’ll be the head shopper and planner, too.  Andy is a night owl, and likes to go to bed rather late and get up even later, so it seems like a recipe for disaster to tell them, “Thou SHALT get the turkey in the oven by 10am…) because, really, IS that a rule?

I’ll help as I can, mainly by convincing Andy that buying ready-made foods is ABSOLUTELY EXCELLENT!  There’s no need to mash potatoes, make gravy, or make desserts when so many excellent options are available.  Yes, I have a stable of dishes that I make each year, and I’ll make them again next year, but this year we’ll have a very special menu for the family dealing with chemo and mourning.

I think we’re all a bit scared about how rough this Thanksgiving will be.

Favorite Grey Quilt

It’s only taken me over six admissions to hit upon a recipe for a much more positive experience; this time I brought my own pillow and quilt, and THIS has allowed me to have one of the better night’s sleep at St. John’s.  The thin cotton blankets they use here are SO puny, even stacking several of them up means a lot of fussing and rearranging.  My good ol’ target quilt works beautifully and STAYS PUT for a nice night’s sleep.

Oh, and my OWN GOWN!  I’ve foresworn the hospital gown, I have a gown of my own I’ve altered to allow very easy access to my port, and it’s working great!  The nurses all know me quite well now, and they’re happy to let me wear a night gown that doesn’t do double duty as a pup tent.

And pillows?  I need my pillow from home, and I have it now, and I’m happy.  And I didn’t even make Kathleen drive 25 miles out of her way to go get it…

Later today I’m going to have Andy help me rearrange my room (they’re SO used to me doing this at the hospital now, but – honestly – I do have better ideas for how to make the room flow and give the nurses more space to do their work!)

Back In The Hospital

Yesterday I was admitted back for more scheduled chemo, this time a HUGE bag of Metheltrexone (?) was administered after some other chemo drugs, and now I stay at St. John’s for at least 3 days while they monitor me to make certain I’m handing the new chemo well.  THIS is the high-power stuff (40 ml of it) that is the scary part of M=CODEX/Ivac (if I’m writing that correctly…) and I’ve been fearful of it.

Well, now it’s al in, they have me back on fluids (which make me pee like there’s no tomorrow) and I’m back on high dose dexemethesone, too, which has made my blood sugar SOAR up to 500 (I didn’t even know that was possible!) so I’m taking insulin, too.

My entire family has had Type2 Diabetes.  I say, “has had” because my entire blood family – those who haven’t passed from cancer related stuff – has passed from diabetes/heart disease related stuff.  The curse of the hillbilly-high-fat-and-sugar diet, and the curse of living in a cancer cluster (Parkersburg, WV) has taken it’s toll on my family.

I’ve never been thin, but compared to many in my family I’m absolutely svelt.  Right now I’m round as a steroid-pill and bald as Uncle Fester, but when I’m not pumped full of dex I tend to be a bit thinner looking than I am now.

I made the choice when I was 16 to leave the Ohio Valley/WV area and go to college, then to NYC, and not to return.  I knew that living with so much chemical input into the drinking water, so much coal dust in the rivers, and so much deep fried food would play hell with my health, so I chose to live where I could express myself artistically and be the person I always wanted to be – a New Yorker.

I was strongly affected by Television, my first role model was Anne Marie on THAT GIRL!  Later my role model tendencies switched to Rhoda (and I DID work in costuming!) which made it SO ironic when eventually I moved to the Twin Cities.

Am I now channeling my inner Phyllis (post Lars, now…) and will I eventually end up in San Francisco?  Is this part of the blog entirely senseless to those of you born after 1970?  Sorry, childhood role models will remain childhood role models.

I’m not dealing with Gerry’s loss right now.  I’ve made the decision that I will address it in full, with all of the emotions that entails, when I am better able to allow myself to.  I’m not ignoring it, I cry, I’m sad, but I can’t give myself up to the grief and continue with my recovery as I need to.

I hope this doesn’t sound heartless.  It is hard, like missing his memorial service, or not circulating with the dozens of folks who came to the house after the service.  I promised my doc I wouldn’t put myself into close proximity with more than a dozen folks for infection’s sake, and I physically just couldn’t make it to the service. But more to the point, I don’t think, emotionally, I could have extended so much of myself and would have been able to keep the strength I need to get through this chemo, which is so damned hard.

The kids, I’ve been told, did a stellar job.  Max taped it using professional equipment from SPNN, and he’ll be editing it together with some lovely family video that Andy fortuitously had transferred to DVD just a few months ago.  When I have that edit, I’ll post it here so you can all see how amazing my kids are to have put something like that together.  Amazing.

Max will return to college this well, probably while I’m still in the hospital.  It’s been amazing to have him home, exactly what we all needed; a bit of normalcy.  If this current chemo round goes well, I may be starting my FOURTH and FINAL chemo sometime around Nov 12, and then we shall see…

I have no idea, when this whole “cancer” thing is done, whether my body will be as it was before.  I’m getting a growing sense that, like Gerry, I will ALWAYS carry the pain of the tumor in my back and the damage done by it’s growth into two vertebrae.  Will I always be on pain meds to deal with the constant bone & spine pain?  I guess these are things that will be revealed I I continue with my recovery/remission.  Which are lovely words.