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.

Saddest Day of My Life

I’m overwhelmed right now, so I’m going to keep this brief.

The dearest man I ever knew, my husband of 25 years, Gerry Landy, died on Sunday. It wasn’t entirely unexpected; he had been suffering from heart complications since March. Friday and Saturday he was at the Mayo Clinic for his heart, he was admitted on Saturday, and his rapid decline was entirely unexpected.

My own health is very bad right now, I’m dizzy and nauseous every day from the Chemo and can’t sit up or even lay down comfortably. This makes it impossible to answer emails or messages, I know all of you mean well and love us, but I will not be able to correspond with anyone for a while.

We’re still working out the details of a memorial service. As soon as I have better information I will post it here.

Thank you in advance for your thoughts and your love. I know the kids and I will get through this, but right now the path seems very dark especially since I can’t raise my head up.

“Once more unto the breach…”

In many states once you get outside of the city areas the highways have poetic names like “Highway M” or, “Highway Z” or, “Highway PP.”

Every time Kathleen and I drive through Wisconsin we pass a sign that reads, “Hwy V”  I have yet to be on top of my passenger duties enough to snap a photo of the sign, but it always makes me smile and imagine that it’s pronounced, “Highway The Fifth” and can almost hear, “Once more under the bridge, dear friends…” in my head.

So yesterday I reentered the world of Chemo, this time for the third time, and the day was rough.  The chemo itself wasn’t TOO rough, it’s never terrible while I’m getting it.  It takes about a week for the effects to kick in.  But the start of this round are a few out-patient treatments, which I like better than staying in the hospital.

The main reason I like to be out of the hospital is that it’s always a crap shoot what kind of nurse one will get, and so far my odds are running 5-1 “excellent nurse, very helpful” vs “nurse who can’t be bothered, not great.”  The type of nurse that’s assigned directly affects the quality of care, kindness means SO MUCH and when it’s missing from the nursing equation, it can be a bit hellish.

Of course I’d rather have an efficient nurse than a sweet-but-clueless nurse (I’ve SELDOM had the latter, for what it’s worth) but overall I’d prefer an efficient and KIND nurse.

So yesterday, my day started with a Lumbar Puncture (and we know how I love those…)

I checked the online portal and was surprised to see my in-time had been changed to 9:15 from 9:30, so I rushed Andy along and we made it, but just a bit late.

Upon check in, though, we were told that the appt had been cancelled.  I’ve become used to Health East cancelling my appts on a dime, usually after an extended fasting period (this happened TWICE last week) but I was pretty frustrated.  The admin who checked us in was also flummoxed, she knows me and remembered my name and was surprised to see my appt had disappeared.

She asked us to wait to the side while she got a nurse to explain the situation, so we sat for about 20-30 minutes.  Finally a nurse came out and did the nurse-walk think I really hate (where they walk really fast but I can’t keep up because I’m on walker and in pain…)  As we entered the dressing area he turned to us and said, rather curtly, “You should have been here an hour ago, you know…”

And and I were NOT having it.  We kid of tag-teamed him, “No, we weren’t – until an hour ago the online portal said we should be here at 9:30!”  He was not having it, he insisted that it was folks like us who were late who held up everyone for the rest of the day.  We asked for a different nurse.

The new nurse was lovely, but she couldn’t access my port for love or money.  My port has been a problem since it was put in, and I always prepare myself for a decent amount of pain as they try to get the needle to work into the diaphragm of the port.  Even with the cream it’s very painful.

So as time ticked away, and they had to take person after person ahead of me, it became clear that this wasn’t working.  They sent me up to the chemo beds and the nurse in the chemo area had been able to access the port, although it took a bit of fiddling with a type of blood thinner to actually get my ‘blood draw’ to come through correctly.  I received my several hours of different chemo drugs.  By this point I was starving, but no food was allowed as the lumbar puncture’d been rescheduled for 3:30.

Back down to Interventional Radiology, this time I was the only patient in the area and was taken in pretty quickly.  I explained about the pain the last time I had the procedure and several of the nurses had been at previous non-painful punctures with me, so that was a help.  We made sure that a decent amount of time had passed between starting the pain meds and the actual puncture, which was enough to make it practically pain free.

Such a long, intense and confusing day is almost harder for Andy than it is for me.

Andy hates to wait in the hospital for hours, so generally after I’m settled in someplace they’ll bug out and run home to check on Gerry, take the dog for a walk, and come back in time to see me settled into my next appointment.  Sometimes this works great, but sometimes this can lead to a bit of a traffic nightmare with Andy finding themselves between locations when I need them near me for some information stuff, or with it just taking longer to get from point A to B than Andy expected.

So as frustrated and exhausted (and hungry) as I was at the end of my day, Andy was almost MORE frustrated.  Thankfully they had brought me some food, so when the only think I really felt like I could eat from the menu (red jello) wasn’t available, Andy had an alternative for me and it was DELICIOUS.  But we had a rough ride home.

These long, long, hungry and painful days are not fun for ANYONE.  Maybe we should’ve taken “Highway The Fifth.”

I’m HONGRY, Mama…

When my brother, Jimmy, and I were little we’d devil our mom by mewling, plaintively, “I’m HONGRY!” and she’d flap her dish towel at us and chase us out of the kitchen.

She new we were making fun of her, in a loving way, of her accent and her family.  After all, Jimmy and I were born in the big city of TOLEDO, and she was from Reedy, WV (which, at that point, barely existed any more…)

What Can I Eat?
Having cancer, for me, means that I’m FRIGGIN’ STARVING almost all the time, but very few things sound good, and fewer things taste edible.  Once I light on something that I can actually EAT, I spend days hoping that my tastes won’t change again.  What I love on Monday can sometimes taste like doggy-do on Tuesday, and there’s no rhyme or reason to it.  It’s not about spice, or temperature of food, or sugar content, or really anything.

One constant has been tea.  I love a good cup of tea, and for better or for worse THAT is a delicious thing to cling to.  I’m also good with bananas and peanut butter is generally a positive.  There were a few days when the smell of it made me nauseas, but since then I’ve returned to the land of Smucker’s peanut butter, and in small amounts it’s good food.

One would think that friend foods are a no-no, but for whatever reason the fish sandwich from Culvers is exactly what I crave most days.  Fish & Chips in general (hold the chips) are tops on my list every day.  At least, this week.

Standing up long enough to actually MAKE that cup of tea, or butter that toast, or peel that banana is another story.  My back hurts SO badly, I think the pain is from the original tumor (in my T9 and T10 vertebrae) and also from the cancer metastasizing into other parts of my spine and hips.  Finding a comfortable position to sleep, or sit, or stand — it’s hard.  I am SO fortunate to have a nice recliner that seems to suit me very well.

I bought it (ostensibly) for Gerry for Father’s Day several years ago, but it never seemed to suit him.  Funny how many things I’ve bought for Gerry have become mine by default!

Picking My Battles
I had to give up a project today because I realized that with the deadline looming, and with two more chemo sessions lined up, there was NO WAY that I would be able to complete this project.  The weight of expectations was so heavy, and now that I’ve given up I feel a bit of guilt, but even more relief.  My brain needs to be sending as many positive thoughts to my body for healing, not fretting over getting a sweater knit — something that dozens of other folks could do just as well, if not better than I!

Back To Mom
Days like today, though, I swear I could go for some of my mom’s classic Soup Beans & Corn Bread, or her Fried Chicken.  Even some of her baked beans.

We ate like poor hillbillies, but damn that was some tasty food!

I miss my mom for so many reasons, but friend chicken is one of the big ones.

Hello Again, My Friends!

I’m up.  It’s 5am and by default I have Morning Joe on (I NEVER watched that show until I had cancer, now it’s something I automatically turn on when I’m up with my early morning cancer wakings.)

I feel like crap, but I honestly feel like much BETTER crap than I did a few days ago.

This has been true every day that I’ve queried myself for the past two weeks.

I feel like doggy-doo, but it’s better looking doggy-doo than yesterday.

HUGE on my mind right now is the start of my next (third) round of chemo, set to start on Monday 10/15.  I will be hospitalized for 5 days for this adventure.

I’m smack in the middle of the four full rounds of chemo that are required to treat this fast moving cancer, two are finished, two are yet to go.

My Chemo Pump Is My Constant Companion

Of the two that are finished, one was an ‘easy’ one (I was able to do the chemo at home with a pump attached to my port.)

The other chemo round was a very hard one (in the hospital for the full time, lots of sickness, lots of pain and exhaustion, released when the chemo was finally finished.) 

The recovery from chemo rounds 1 & 2 were exactly as you’d imagine; Round 1 went pretty smoothly, Round 2 was hell.  Rounds 3 & 4 will be MUCH more like Round 2, no more Mr.-Nice-Pump for me, it’s all going to be chemo in a hospital bed, clinging to the railing, puking and trying not to make too much of a mess as I get up to use the toilet.  Actually, I guess I AM glad that it’s not happening in my home.

I’m terrified that Round 3 will be even MORE hellish, and I fear that I’m going to cry like a little girl.

Which I KNOW is “okay” – but it’s still not fun.

I keep racking my brain for ANY food that is remotely appealing, but everything I try (even stuff that “sounds good”) ends up being a vehicle for nausea.  Even my old stand by, ice cream.  Oy.

Yep, I def only can stomach the pricier ‘real ingredients’ stuff!

So, I’m still here.  A little shaky, a little pale, and apparently I’m right in the “eye” of the chemo, but I’ll get through it.  Thank you for being here with me.

Physically I feel rather lonely.  I can’t really see many folks, I’m SO susceptible to any kind of infection, so the fewer people I see, the better my chances for getting through this without a serious complication.  I miss human interaction, though.  Gerry loves me, Andy is amazing, and every week or so I see Kathleen.  But aside from that I’m kind of on my own, and I never realized how much I get from just BEING with other folks.

Thank god for the kitties and Jasper, they love me so much, and I love them.

• Home Again [A Continuing Series of Bullet Points]

I’m too tired to blog, to weak to think straight, but I’m home.

  • I’m exhausted, covered in adhesive from various body monitors, IV’s & ports.
  • Every breath I take, even when I’m just sitting, feels ragged and shaky.
  • I’m weak as a kitten, but nowhere near as adorable.
  • I’m home, I’m up at 5, sitting in my chair.  That is enough.
  • I’m drinking tea, watching an excellent BBC drama, with a glass of water at my side. That is MORE than ENOUGH.

SPRUNG Today!

After 5 days in the hospital, I’ll be getting sprung today!

A visit somewhere away from home is always hard for me, even a vacation.  I’m a Virgo, I love my home SO MUCH that when I’m forced to be away I feel oddly dislocated, not connected to my strength.  My strength IS my home, my family, my pets and all of the familiar things that make my life so rich.

So today, depending on whether the doctor comes to see me and give me the all clear, I’ll be heading home and I’m SO DAMNED GLAD!

It’s not just because I’ve been here having chemo, although that’s a huge reason.  Being someplace where fate compels you to experience pain and nausea isn’t fun, knowing I’ll have to return here at least twice more for two more sessions of my CODOX chemo is daunting.  At least it’ll be happening in the autumn, my favorite time of the year, and I think that may make things a bit easier.

The fact that this visit hasn’t been pure hell is due entirely to the chemo nurses here at St. Johns.  They are such a wonderful bunch of folks, so caring and so careful!  I hear how they interact with other patients who are in various states of comprehension and confusion, and of course I see how they deal with me, which is lovingly, as if I’m a family member!

So this is my shout out to the nurses I’ve had the joy of dealing with this week, especially Abby and Liz, Jenn and Dale, who all had dealt with me when I was here in July with my original diagnosis and recognized me, even in my swollen, hairless state!

It’s actually amazing to me how many folks remember me, the food service folks, the cleaners, the nurse’s aids (Hi, Josh!) and the auxiliary folks who make this place tick.

When you think about it, I am so fortunate to have such a first class facility as St. John’s just 6 miles from my home, and THIS is the part of the cancer journey where I was happier to be back up in Maplewood than in Rochester. Mayo is amazing, but the ability to pick up the phone and see Gerry or Andy in 15 minutes if I REALLY need to is pretty amazing.

Yarn can’t assuage Jasper’s longing for his people.

I only wish I could see Jasper, I think that would be good for both of us.

Jasper is struggling with something right now, he’s been poorly, and he’s due for his rabies booster so we need to get him to the vets.  His ears have been giving him problems for a while, he tends to get build-up in his left ear, for which we use medicated pads every day, and for the most part that tends to keep his distress under control.

But now he’s just —off — and that is worrying to a pet owner, especially one who is not at home.  And that is especially worrying when that pet owner tends to be the main person in that pet’s life, and I am that.

Jasper is beloved by everyone now, but for the first few years we had him he was a difficult doggie.  He was a rescue who was terrified of tall men, and broom, and had obviously been mistreated in some way.  When a tall man would appear at our home for any reason, Jasper would stop, paralyzed with fear, and just pee.  We became well versed in doggie diapers, he wore them off and on for almost 2 years, but S L O W L Y  began to trust us more and more.

The Three Kids, “The Pack”

As Max grew taller and more responsible we put him in charge of Jasper’s meals and walks, which made Jasper LOVE Max with a focus no one else in the family got from him!  So Max being away from college and me being missing has got to be difficult for a dog who NEVER 100% settles down until all of his pack is at home!

Well, boy, today one of your pack will be home to hug and love you, and get you to the vet for a check up and your boosters!

Far Away Worry

Bike Ride From Home to Hospital

I’m 6 miles from Gerry right now, and I feel 1,000 miles away.  If I could cycle, I’d be home in 31 minutes via the Bruce Vento trail.

Oh, that I could ride my bike again, today.

He visited two days ago, but when he got to my room he was overwhelmed with exhaustion from the walk from the car.

I’m so concerned about his heart condition, he just seems to be dragging, low on energy and hope, and also missing me being at home.  He’s not well, Jasper’s not well (missing me, or something more?) and Andy is left home alone as the care-giver in charge.

…and here I sit, bald and pumped up on chemo drugs, not able to keep down food (except for ice pops and the errant ice cream, which generally ends up being a mistake) and not able to BE THERE for Gerry.  Who needs me mentally almost more than he needs me physically.

My Current View

Why is it so hard for some folks – for men? – to admit that they need help?  Our yard needs mowing, I know that Gerry gets wiped out SO easily.  Last week I utilized Next Door to find someone to mow it, but as soon as I did Gerry insisted that no, HE could CERTAINLY mow the yard.  And so he started mowing.

And he got totally wiped. WIPED.

So Andy picked up the slack.  And I jumped in and did the front yard (which, in retrospect, may NOT have been the best idea I ever had…) and together we got the yard done.

Just like a frontier family.  With a heart condition and two forms of cancer.

The View I Want To See

I hate to think what he’s attempting to do when I’m NOT at home.  Re-shingle the roof?  Find a barn to raise?

I get sprung from here on Sunday. Today is my last chemo of this session, then depending on my labs I’ll be home for two or perhaps three weeks, getting my lab numbers back up (platelets, etc.) and perhaps a transfusion.

I am SO looking forward to being home, which I miss so much.

Which is probably just another way of saying how much I miss Gerry.

Gerry, for pity’s sake, PLEASE take care of yourself when I’m away!

Home Sweet Downsize! Just LOOK at that lawn!