Testing Myself

As my recovery progresses, I find that I am ‘testing myself’ many times each week to quantify how much independence I’ve recovered.

A few months ago I was sleeping around 18 hours a day.  I’d sleep 12 hours at night, and take two naps during the day.  I needed all that sleep, but now I’m down to only needing about 12 hours a day (sleeping for about 10 hours, with a 2 hour nap in the afternoon)

I’ve been working on my ‘sitting up’ skills.  It wasn’t long ago that I couldn’t sit up for more than 10-15 minutes.  Then I was able to sit up for a half hour.  It took me FOREVER to be able to sit up for an hour, but after that I shot ahead in leaps and bounds and now I can stay upright for about 5-6 hours before I NEED to be horizontal.  But it’s still progress.  I’m working on increasing that even more as the start date of my new tutoring job grows closer!

On not insanely HOT days (like today), I’ve been getting out for a walk.  THIS is the most draining thing I do.  A 6-block walk will knock me out for about 5 hours.  A 3 block walk (to Wong’s Kitchen…) will knock me out for about an hour (just long enough to eat my Chicken with Broccoli…)

I try to make at least one thing each day; some cookies, a loaf of bread, a piecrust for quiche or a berry pie, a bundt cake.  Making these things makes me feel more like myself, AND with three young adults in the house, there is ALWAYS a need for baked goods.

TRAVEL

But this weekend I tested myself further than I have before!  I drove 3 hours up to my friend, Myrna Stahman’s lakeside cabin, and visited with her and Bob from Friday to Monday.  I learned several things:

  1. I can do this.  It was a long drive, but I did it easily.  I wouldn’t want to drive much longer, but I think I could if I needed to.
  2. New = Difficult. It takes a LOT more energy to be in a ‘new’ place, even if friends are making it as easy as they can!  Just NOT being home made dressing, sleeping, getting to the bathroom, feeding myself, so much harder.  When you have a disability (as I do with my now screwed-up back) you can’t rely on the old rules of logic.  I have visited Myrna many times, and I figured this trip would be about the same level of difficulty. Just the – newness – of being in an environment that hadn’t been tailored to my needs (as my bedroom has been) took a lot more energy and work than I anticipated.  I slept WAY too much for a good houseguest, but Myrna and Bob didn’t seem too put out by their house guest masquerading as Sleeping Beauty.
  3. It’s good to have a friend to travel with.  I took Jasper, he’s friends with Myrna’s dog, and Jasper adores Bob.  It was wonderful to have pupster along as a travel companion, he made me feel more at home.  Even though he refused to do ANY of the driving.

    I don’t have a cool blue one, like this.

  4. Vape is FAST! Using the new cannabis vape that my pharmacist prescribed for me is an INCREDIBLY efficient and fast way to get immediate pain relief.  I’m not terribly fond of any kind of smoking, but I can’t argue with the results.  I have much better pain relief when using my “battery” and cartridge.  I stepped outside a few times this weekend to imbibe, and each time the results were fast and long-ish lasting, hooray!
  5. Memories are hard.  Gerry and I used to visit Myrna and Bob, and every room had different memories of Gerry.  Tears were shed, both with Myrna and alone.  It was hard.  I don’t think it will ever be easy.
  6. There’s no place like home!  I drove home via Costco, where I gassed up the FIAT (touch me!) and then drove on home.  As I was getting my luggage out of the back, and wishing that Andy were home, right around the garage they came!  (I thought they were at a doctor’s appt.)  And, like a good kid, Andy carried my bags and suitcase into the house, got me settled in, and now I sit, recovering from my 4-day excursion.
  7. I don’t think I’m ready for fiber shows yet.  There’d been some talk with Kathleen that I may be able to come to Stitches Midwest, but I don’t know if I could handle it, pain-wise.  Also, the looks on Myrna and Bob’s faces when I walked — even though they were as kind as they could be and tried not to give anything away — told me quite a bit.  Unless you’re used to my herky-jerky movements, I think it’s a bit of a shock to see how I have to swing my body around to make my legs work. I think I would feel WAAY too self conscious, and I think the pain level would be too high.

I’m hoping I will get better; much, much better; but until then it’s so hard for me to see the look on friend’s faces who are so worried about me.  Andy, Evan and Max have all sort of learned NOT to show me how worried they are, but that’s a hard ask of friends who don’t see me every day.

So I’m taking a few days off from the tests, and I’m just going to relax over the next week while Andy and Evan are off on a camping trip.  Max will be with me every evening, and as exhausted as I am, I may just SLEEP for most of the period!

Life is hard, but life is good.

Today life is stupid hot.

Game Of Alones

.I’ve done a lot of things alone in the past six months, since losing Gerry.

I eat most of my meals alone, in my room, since stairs remain so difficult.  I sleep alone, I am learning to walk again, alone.

Andy is with me quite a bit, but, as a percentage of my days, I see very few folks on a regular basis.

And, of course, I never see the one person I really want to see,
and won’t ever see him again.

I miss Gerry.  It seems painfully obvious to write that, but it’s the strongest thread in this difficult year; I miss Gerry.

I miss walking, I miss good health, I miss the ease of my previous life, I miss cycling, but most of all I miss Gerry.

I miss having someone around who would know, intimately, the pain that I’m feeling in my back (he had several crushed vertebrae from his Myeloma.)

I miss Gerry’s fastidiousness, the house seems shabby and in an odd state of disrepair since he’s been gone.  Andy lacks the time and energy and I am not physically able to keep things as nice as they used to be.

I miss Gerry’s humor, although I swear that I hear his laughter many times throughout the day.  We’d become such a comedy “duo” over our 25 years of marriage that I can almost write his jokes for him, in my mind, when the opportunity arises.

I miss his hugs.  He was small, but strong, and I miss him surprising me with a hug from behind while I’m reading or writing or just sitting outside.

It feels so weird, though, that the times I’ve missed him MOST since his passing have been while watching this final season of Game Of Thrones.

In our modern world, one of the activities that brings couples together is watching a favorite show.  Gerry and I both loved television, unashamedly, but we didn’t agree on every show (of course!)

One show we absolutely loved was The Americans.  We would save up episode and watch them together on Roku, for hours at a time, binging, and we’d love it.

I feel a special note of gratitude to The Americans for closing the show so beautifully,
and doing it in time for Gerry to appreciate the ending.

Game Of Thrones, though, is continuing on, sans Gerry, through it’s last season.

Gerry and I loved GOT.  We loved the plot twists, the bizarre theories, the wild fans and all of the videos.  Gerry especially loved listening to one YouTube channel with amazing theories (most proved correct!) while he was puttering around in the kitchen, his domain.

Sometimes I think I can hear him in there, making a grilled cheese sandwich,
but alas it’s the cat doing something catlike.

I put off watching Game Of Thrones this season until plot reveals on Facebook made me chose between tuning in, or having the season spoiled.  I didn’t want to watch alone, but I didn’t want to watch with anyone else.  So I watched, alone

It’s a good season of GOT, Gerry would have loved it.  I’m loving it.  It seems a lovely farewell to a beloved TV series; I wish I had had time to give Gerry the same kind of farewell.  I still wake up in a cold sweat from dreams about Gerry dying with no one around him but medical staff, no family, no me.  I was functionally immobile from my reaction to strong chemo, but that doesn’t lessen my guilt at not being WITH him at the end.  Just because you know something’s out of your control doesn’t necessarily lessen the guilt.

Neither of the kids are into the show, and I hate to drag Andy into the final season just so I’m not watching alone.  Besides, it’s cathartic in a way that nothing else has been, to watch – and cry – and watch.  Sleep is so much a part of my recovery that I’m usually snoring by 8:30pm, which means I catch up on GOT on Mondays.

I feel less alone watching the show during the day, although in this insanely
dark season I have to close the curtains or I can’t actually SEE anything!

So every Monday during the GOT season here I am, curtains drawn and iPad glowing, weeping, missing Gerry, loving the show, finding a way to deal with widowhood.

The BEST News (and a caveat…)

Yesterday I had a visit with my oncologist and, his exact words (as he shook my hand) were, “Congratulations on surviving cancer…”  The tumor in my spine is officially gone.  I am in remission, and that is amazing news!

From this point I have doctor visits ever 3 months, and a scan every 6 months.  We’ll keep an eye on the lymphoma to make sure it’s really gone (it has a way of sneaking back…) and keep our fingers crossed.

BUT

…I’m not well yet, and it may be 6 months to a year before I’m able to walk well, and function as the Annie Modesitt I want to be!

I’m so at odds with the thought that CANCER is gone, but I STILL feel so damned miserable.  Pain continues, I’m exhausted, I have no balance, I walk as much as I can, over and over, from my room to the bathroom and back, but the progress is SO SLOW that many times I feel in danger of losing hope.  My legs are numb from my toes to my hips (neuropathy) and that makes it hard to walk, too!

But, the tumor is gone! The cancer has LEFT THE BUILDING!  So champagne all around, everybody celebrate!

BUT

…don’t expect much from me in the next year or so. 

I’ll give what I can, but until I can get this damned chemo out of my body, I’m going to be a shadow of what I have been.  I hate that I can’t 100% celebrate the remission of my cancer AND the end of the pain and sickness that keep me in my bed all day and all night.  The tumor may be gone, but the fractures in my back and chemo remain.

My hair is coming back as a salt-and-pepper mix with what feels like a LOT of curl!

Seriously, except for my walks to the bathroom and forays downstairs, I’m generally in bed.  My sitting up time has increased to about an hour, then I just lose the ability to be upright and have to lay down for a few hours.  Exhaustion, it’s not fun.  None of this is.  But we’ve moved a comfy chair into my room and I sit in it as much as I can each day.  Sitting up is an exercise, it helps my balance and strength!

Thank heaven I have good friends and family to support me through this.  I feel like one of the luckiest people in the world, especially with my Andy to care for me.  And I’m growing some more hair, even if it’s hard to tell in the photograph!

Thank you all for your love! I feel it!

 

 

Friends + Andy

I don’t think it’s an exaggeration to say that without my friends + Andy, I would not be here right now.

From the immediate, jaw-dropping LOVE response when I was first diagnosed through the many small gifties and visits from local friends, to the actual financial donations that have kept our heads above water these past 9 months (thank you, thank you, thank you!) and the ‘cleaning crew’ and ‘cooking crew’ love from members of my knitting group (thank you so much, ladies!) i have no idea what state we would be in right now.

There have been many days when Andy is at their wit’s end.  Andy is essentially dealing with a rather large, middle aged BABY who needs feeding and cleaning and entertaining.  At the same time, Andy has taken over the financial, legal, emotional and other necessary paperwork/office visits surrounding long-time disability and recent widowhood, which would be a huge job for an older person, forget a 22 year old just out of college!

Andy is amazing, but this job is a huge one and there are times it’s been TOO BIG.  Now that my mental state is returning to pre-cancer levels and I can actually REMEMBER when I’ve signed a form, or made a visit to a bank, the nuts and bolts of Andy’s job will be getting easier and easier.

A mind is a terrible thing to lose, I’m glad to be getting my own back.

Caring for a family member with cancer, who is struggling with the residual effects of chemo therapy, is NEVER easy.  The fact that Andy does it with such grace is astounding, and the few times that they lose their temper or feel overwhelmed are more than validated by their hard work during all of the other times.

When Max was home for the holidays he stepped up, but it’s hard to just insert someone into a routine, so of course Andy ended up doing yeoman work all through the holidays.  It did give them a bit of respite, though, and we’re looking forward to that this Summer when Max is home for the entire season.

Because I’m doing so much better, and because Andy is in NEED of a respite, they’ve arranged to go visit some college friends for a week at the end of Feb, and will be bringing one friend home to help them with some projects they’ve started.

Who knew my kid had a skill for laying out a room, organizing a basement or creating a really good flow for a home office.  They’ve also showing some skill with the power tools, which gives me a sense of pride since I’ve always loved me a DeWalt Drill.

We’re lining up folks to come and check in on me / stay with me during Andy’s absence. I think we’re pretty much covered now, and that also warms my heart.  My business partner, Kathleen, has been amazing with her visits, and her ever-ready help for Andy.

  Kathleen will be staying with me for almost a week, during which time we will watch EVERY episode of RuPaul’s Drag Race and Outlander. 

Just try and stop us…

So although I am still light years from where I want to be, I do feel myself getting better every day, and that is almost ENTIRELY due to the hard work of Andy and our friends.  (Of course, the doctors and nurses had something to do with it, I’m speaking pretty much about at-home help…)

I still can’t walk easily, my legs are numb and I almost fall all the time.  Almost.  That’s a very important word.  I don’t get downstairs as often as I’d like due to balance and exhaustion issues, but I do what I can, and I walk around upstairs quite a bit each day.  The more I walk, the better my legs feel!

I cannot WAIT for warmer weather so I can walk outside!!
I don’t like to set time-goals because that can lead to disappointment,
but I’m thinking I may be AT LEAST six months away from any kind of bike joy.
I’ll live with that.  I kind of have to…

And today a few very dear friends are coming over to help us clean the house.  This has been a pretty regular thing, thank heavens, because aside from sweeping up a broken glass that the cats knocked onto the floor, there’s not really a lot that I can do to keep the house clean.

I wouldn’t say I’m a clean-freak, but I DO care whether my house is clean, even though I’m in bed more than I’m OUT of bed each day.  Andy does their best, but keeping the house clean is really the least of what they should be worrying about, so we’re VERY grateful to Ellen and Lisa, who are coming over today, with their mops and rubber gloves.

And me? I’ll be SITTING UP IN A CHAIR in my room.  Andy’s rearranged it so that there’s a rocking chair at the foot of my bed, and I’ve been taking advantage of it by sitting up for an hour or so each day.  Just a month ago I couldn’t sit up for more than 15 minutes – huzzah!!

If this sitting up ability keeps growing, maybe I’ll be able to go to a movie with Andy??  There are several local theaters that have recliners and stadium seating,
maybe that would work? 

I need to feel that my physical strength will stand up to 30 minutes of riding in a car each way and 2 hours of movie, but it would be so nice to see How To Train Your Dragon 3 since it’s a family movie series we both love.

Going Backwards?

Being home is the best thing ever, I love home.  I’m a Virgo, and that’s one of the things that supposed to be true for us, we love our HOMES!

I love home, and wherever I go when I travel I try to remake a tiny bit of my home so I don’t feel so homesick.  I’m one of those folks who unpacks into the hotel bureau the MINUTE I get into the room, toothbrush and toiletries in the bathroom, coffee machine set up to make tea, just the way I like it!

But now I’m feeling BED SICK.  I’m sick of being in this bed. It’s a REALLY nice bed, we bought the mattress last year and every day I’m grateful that we sprung for it, it’s where I’m spending 23 hours a day.

Right now BED is the place for me, I have to accept that.  Getting downstairs is a trial, although I do it because it’s great exercise, but the truth is that I NEED to be in bed for most of every day because I need to heal, and it’s taking HELLA longer than I’d anticipated.  I have no patience.  I need sleep, and lots of it.

When I got back from the hospital last Thursday I felt as weak and feeble as I had in November.  Friday I felt like it was December.  Sat & Sun were also kind of like how I felt in December, and now I’m finally catching up to where I was before I went for my metheltrexate chemo.

Metheltrexate: Come for the bright yellow color,
stay for the bone quenching exhaustion and mouth sores!

So my patience is shot, I’ve watched EVERY episode of Friends and Forensic Files (UK Friends, I REALLY want to go on “Mastermind” with my specialty as Forensic Files…)

My hair is SLOWLY growing back, but I’m looking VERY hip right now.  See?

And, my sitting up limit has been reached, so I’m signing off so I can lay down in that delicious bed!

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.

“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.