An Arc

I can’t believe I haven’t blogged in a month!

It’s been QUITE a month.  I thought that by now I’d be writing about my adorable tutoring students, and how every day I could see in their happy, fascinated faces that I’d made a REAL DIFFERENCE in their little reading lives.

Unfortunately, Health ran interference on my Life, and Health is a hog about always taking center stage.

TUTORING

I realized a few weeks into the Americorps tutoring job that I probably didn’t have the stamina, but I was still hopeful that I’d be able to increase my strength day by day.

Then I fell last Saturday.  I was in the basement, I washed my hands (thereby getting a bit of water on the concrete floor) then turned to walk away and fell HARD right on my face.  My nose was bloody, my tooth was chipped, and my chest felt as though someone with huge boots had kicked me, HARD.

Getting up was hard, so hard, but I did it.  I got upstairs and cleaned myself up as well as I could, waited for Andy to get home from running errands, and decided to try to ‘sleep it off’ because I just felt so wiped out after my crawl upstairs.

The next day I hurt just as bad, so we went off to the ER so I could make certain that I hadn’t damaged my spine or any of my cancer-affected bones, and we learned that I had definitely bruised – might have broken (although it’s hard to tell…) – a couple of ribs.  They offered me some pain relief, but I told them in all honesty that I was already taking pain meds for my back and Tylenol was probably the best thing for the swelling that was causing the pain.

Upon returning home, and taking time for some careful consideration, I finally had to admit to myself that I wouldn’t be able to do the duties of my job for the next few weeks, and I couldn’t guarantee that I’d be able to do the work even AFTER those weeks had passed.  So I had to make the very, very difficult decision to back out of the Ameritrade tutoring job, which breaks my heart a little.  So many broken things all over the place.

PAIN CENTER

Tuesday I had a first visit with a pain clinic, which went – oddly.  I’m still trying to work out exactly what happened, here’s how I wrote about it on FaceBook:

My first pain management appt didn’t go well. Apparently I somehow angered the CNP, I’m still trying to figure out how.

One minute she was staring me down (unblinking, very odd) then when I mentioned that it made me uncomfortable, she looked away and said, ‘Well, since I’m not allowed to LOOK at YOU..!’ willfully misunderstanding what I was saying.  The appointment ended with her telling me that it was “a privilege for me to be seen at the pain center,” and she left abruptly.

I had a meeting with another nurse and the clinic manager, they’re going to try to hook me up with a different person – a doctor – for a future appointment. In the mean time I’m reliant on my PCP for my pain meds.

Maybe it’s better to just keep it that way, I got an odd vibe from this pain management center. I don’t have a camera or anything, I can’t ‘rewatch’ the interaction – I’m still trying to figure out what I did, or didn’t do, that seemed to anger the CNP so much.

I walked away with such an odd feeling about the pain center, I’d decided by the time I got to my car not to pursue treatment there.

Yesterday I met with my therapist, who deals with cancer patients and is affiliated with my cancer center.  She was able to pull up the notes from the CNP in my chart, (what was written after our very brief appointment) and I was startled by them.

In the comments I am “She”

She notes that she feels forced to come the [sic] pain center and has no other choice according to her oncologist.* . She also notes that OxyContin is really an “8 hour medication not a 12 hr”*^, she also notes that she will not wean off of her opiods because she has tried and the pain was too excruciating,** she has receiving [sic] medication from her oncology provider at this time.  initial consultation did not go well.  The patient reports to the provider that she was offended because the provider was “staring intently” while listening,^ an apology was provided to the patient^^ and she asked for the clinic manager.  The visit has since ended abruptly.  No charge from the provider at this time as this is not a complete visit.

It continues ominously

Previous to the visit her oncology notes were reviewed – it appears that they have tried to reduce her use of opiods as her oncology diagnosis is in remission.**

Addendum – patients case will be brought to case review for evaluation, as the clinic manager has discussed with the patient, no prescriptions will be provided to her from the pain center.  No UDT was taken today.  Clinic manager aware and involved.
_

* This is not true, I was the person asking for the appointment, I asked my oncologist AND my Primary Care Physician for a referral to visit the pain clinic.  This is a lie.

*^Articles re: 12-hr/8-hr OxyContin problem, it’s a real thing, and I discussed with her that my husband had taken Oxy for over 12 years and this was something he had researched.
          LA Times, May 5, 2016
          Practical Pain Management, July 2016

** I started at 90mg of OxyContin/day in January, and twice I’ve been weaned down successfully (once to 60mg/day, then to 40mg/day) and with my full cooperation.  Recently, my doctor had me step down from 40mg/day to 20mg/day, which I blogged about, and that was very difficult.  My doctor and I decided that it was better to return me to the 40mg/day after a two week trial at a lower dose.


^ It was very odd.  The CNP just sat and stared at me for a considerable length of time, I’d never had a caregiver or anyone stare at me so intently.


^^ It wasn’t.

Now, I’m probably being overly cautious, but I want to get this in print because I feel like the end of her comments on our visit sound as though she’s planning on taking this to whatever committee addresses these things, and in my worst nightmares she might try to get me declared a pill-seeker.

All she had to do was look at my file and see the scans of my cracked vertebrae to understand the need for ongoing pain relief.  Oy vey.

Acclimation

This year has been a long journey of learning to acclimate myself to a new – everything – it feels like some days.

Recently I was in a group where we were asked to describe ourselves using a series of adjectives.  It was a confusing exercise, and at first no one did very well with it, but as it went along more and more people understood the situation and got into the spirit.

I identified myself as a woman who is a certain age, is a widow, a reader, and is disabled.  It was only after the exercise was over that I realized that I hadn’t used two adjectives which would have been at the top of my list a year ago: knitter/designer and cyclist.  And there’s that new, intensely painful adjective: widow.

It’s weird how upsetting I found all of this, as if over the past year I’d lost my identity in some way.  Reader?  Well, yes, I read, but I’m much more of a knitter or cyclist, right?  I tried to explain it to Andy, but I didn’t do a great job.  Essentially, I felt that I’d had a huge part of my personality removed, and I guess I have.

I have to admit to myself that I haven’t ridden my bike in any meaningful way in over a year, and although I DO knit, it’s not with the same passion and intensity I’d had even last year.  I may be a cyclist/knitter in the same way I was again, but right now I’m just a reader, which is fine.  I just can’t seem to muster up the same passion for my knitting, and that’s due in part to my physical limitations; it’s hard for me to sit in a position conducive to knitting for more than an hour or so.

However, I will be a widow for, well, probably forever.  Which is fine, I’m not seeking to change that status any time soon.  It’s a new adjective, a new label, and I have to get used to it.

Scary Week Ahead

A few weeks ago my doctor wanted to try to reduce the pain meds I’m on, we’ve done that every few months, but this time was different for two reasons: He wanted to ENTIRELY remove my evening pain meds (replaced, if necessary, with ‘breakthrough pain’ oxycodone), and he was (unknown to me) going to be out of town for 2 weeks.

I had some major problems with the medicine cut-back so the nurse in my doctor’s office adjusted my dosage, and when my doc returned he decided to just return to what I’d been taking originally, yay!

Except it was a really rough two weeks.

It was hard to get by with minimal pain relief, I couldn’t sleep and that led to daily exhaustion, which led to more pain, and soon I was in a vicious spiral that took me almost two weeks to halt and reverse.  I don’t think my doc anticipated how difficult this medicine changeover would be, I hope he carries this new knowledge with him when dealing with future patients.

I had felt like I was making some great strides before the medicine change up.  Those were put on hold, but I’m working hard to increase my stamina again.  This week I attended a full day kick-off event for my Americorp job, and was very happy to get through it.  I paid the next day in exhaustion and soreness, but I got through it!

This coming week I have three days of training for Americorp, and I’m pretty scared about it.  Tues, Wed & Thurs I need to be at the Minneapolis Convention Center at 7:30am and stay until 4:30pm. I’ve spoken about my fears to the director of our local program, he assured me that if I’m unable to stay the full day they can work around that.

Then on Saturday my cookies are due to the State Fair Creative Events building.  I want to decorate them by Thursday so the royal icing is dry and hard enough to transport on Sat. That means each day at the end of my Americorp training I’ll be doing a bit of decorating (I like to do it over a few days to build up the icing)

It’s going to be a long week, but I’m not doing anything that I haven’t ASKED to do!  And I have a strategy to step back from either obligation if I feel I need to.  This week I’ll be taking my walker, that will make the day easier!  (Especially since the handicapped parking spaces are usually so far away from whatever event I’m going to!)

I feel certain that when my job actually begins, when I’m actually AT the elementary school, the days will be shorter and much easier than these training days will be.  Who knows?  By that time I may be riding my bike the 7 blocks to the school every day, wouldn’t THAT be a kick in the walker!

Missing In Action

It’s been a very emotional week for me, not least because my doc has had me cut back on my Oxycontin to half of my previous dose, although I also have 5mg Oxycondone I can take for breakthrough pain.  I’ve done this step-down twice already since ending chemo, and I agree that it’s necessary to reevaluate every now and then to make certain I’m taking the minimum I need.

But I think right now I’m below the minimum amount.

Max & Gerry on a tour of Gustavus Adolphus

I’m exhausted from not sleeping, sleeping’s been difficult because there’s so much pain.  The 5mg doesn’t seem to address the pain as well as the 20mg does (duh) and the extra relief I get from medical marijuana just isn’t cutting it.  It’s been a hard week, and emotionally, I’m feeling very drained and not terribly resilient.

Since visiting my friends last weekend I’ve been missing Gerry like crazy.  I’m sure it was going to place where we’d gone many times, and hearing him talked about with so much love by Myrna and Bob.  Bob said Gerry had one of the best political minds, and humor minds, he met.  That is such a lovely compliment, because I know how much Gerry would have enjoyed it.  He was the funniest man I ever knew.  And he loved politics.

It’s almost as if my mind put off mourning Gerry full out until I got far enough past my “clean” CT Scan so that I had enough ‘worry space’ in my brain to handle it.  There’s only so much one can worry about at one time, right?

After Gerry died in October I was in shock for quite a long time.  Then just when I was beginning to wrap my mind around the fact he wouldn’t be coming home, I was hit with severe sepsis and was put in the ICU until they figured out it was my port that had become infected.  I know I was closer to death during that week than I’d ever been, and to be honest there were times that week when I wanted to say, “Screw it.”

But I couldn’t, because I have two kids, and because I just couldn’t.  For better or for worse my body fought hard, even if my mind and heart weren’t in the battle.

Today Max was walking around “wearing” Kitty Nitro around his neck, looking for all the world like a taller, thinner, MORE bearded version of his dad.

Things Change SO Quickly

I’ve been pretty vocal during my recovery from cancer/chemo about different instances that arise and thwart me, or spur me on, toward a full recovery.

Recently I’ve had a nice amount of positive steps forward, but I always hold in the back of my mind that recovery isn’t a straight line, but there are a lot of peaks and valleys in my [generally] upward journey.  That’s why I blog and facebook about this so much, so I, myself, can go back and read my posts and SEE how far I’ve come.  Sometimes being able to quantify a positive change is so hard, having a record of the changes is helpful in keeping a positive outlook!

Today is a low day.

I live in Minnesota, so I’m ready for a blizzard on any given day*, and it’s not a surprise to wake up after a few days of upper 60’s temperatures to a day that’s wet and cold and blustery.  Today it feels like the cold’s crept right into my bones (especially my knees and back) and is laughing at me.  Ha, ha, cold, I hear you, and I laugh back!

Facsimile of the Chocolate Cake

I had big plans to make a chocolate cake today.

It doesn’t sound like a huge deal, but it is.  Getting downstairs isn’t the marathon it was just a month ago, but it’s an effort.  STANDING is harder than anything, and baking is more about standing than anything else.  Silly things like lifting up the mixer to move it over by the electrical outlet, carrying eggs, sifting flour, etc., are very difficult when the back is so painful.

So once I got downstairs, ready to make the cake (whose recipe I’ve long memorized!) I found that I could barely stand.  There were also several ‘gifties’ from the pup to be cleaned up, and THAT had a painful effect on my back, too!

So no cake for me.  Or for the family.  I was really looking forward to it (it’s the chocolate bundt cake I make, this time I was going to add white chocolate chips and some walnuts) and I’m probably healthier and happier NOT making and eating it.  But I wanted to make it.

More than making the cake, I wanted to have another day with low pain.  But that’s not going to be the case today, so I need to find a way to be at peace with that, deal with the pain, do what I’m able to do and not feel bad that I can’t do more.

Today my expectations outpace my limitations.  But tomorrow may be a cake day!  Stay tuned!

In other news, Max and his girlfriend Sophie have finished their semester in Vienna and are visiting London before they come home.  Right now they’ve traveled up to Scotland and are staying with our friends, Di & Colm, for a few days.  I can’t explain how wonderful and amazing it is to have friends who are SO kind as to host the kids for a few days, and show them so much of the beauty of Scotland in just a few days.  THANK YOU DI & COLM!

*Not really, it doesn’t generally snow in May here…

Chronic Pain Revisited

About nine years ago I was diagnosed with Fibromyalgia, which was a kick in the pants.  But I discovered that regular exercise (bike riding for me), vitamin D3 AND cutting wheat out of my diet seemed to help me quite a bit.

Just last year I discovered that ALL wheat wasn’t the problem, just – maybe – wheat that had been processed with Round Up during harvesting. So I decided to stick with only organic wheat and that worked well.  So when I wanted a treat, I’d bake it myself, and we found a really nice organic pasta that seemed to ‘play well’ with my pain.

Now I’m facing a new kind of chronic pain, and this one won’t be made better with diet (although exercise is always good at strengthening the muscles, which help support my body and can ease pain…)

My new chronic pain comes from the damaged vertebrae (crushed? split?) T9 and T10 mostly, along with one lower down in the lumbar area.  These are areas where I had tumors growing during my lymphoma.

My back pain was what alerted me that there was something more serious going on in my body.  Apparently by the time I had my MRI last July and they found the tumors (spine ones, AND tumors in my chest area and back of my skull) the spine tumor had grown SO large that it had grown through T9 & T10 and had split the verts, or done some kind of major damage.

Through the miracle of radiation treatments and chemo, the tumors are gone, and I am in remission, and I am glad and thankful.

But the damage caused to the spine is still there.  It will remain, and it will cause me pain.

Spinal Cord Injury Levels

I have a special knowledge of this pain because, ironically, Gerry suffered with his T9 & T10 when they were crushed (possibly during physical therapy he shouldn’t have been doing) and he had extreme pain.

He had a procedure called kyphoplasty (he was supposed to have vertebroplasty but as they were wheeling him into the operating room they told him that his insurance would only cover the first procedure, not the one his doctor had recommended…)

But I saw how he suffered every day after his diagnosis with the pain.  Gerry was NOT a complainer – not like me, I could win a gold medal if complaining were ever an olympic event – so when he would mention his back pain it was notable.

He took Oxycontin twice a day, every day, and when he ran out of his drug it was dreadful.  Of course he’d usually run out at 5:05 on Friday, just as his pharmacy had closed and wouldn’t open for the weekend.  I started hiding four of his pills so when he’d run out I’d have enough to get him through the weekend.

Different Flavors of Oxy

I take Oxy three times a day, every day, every eight hours.  By the time I get to hour seven, my back is complaining pretty badly, but I pride myself on seldom dipping into my ‘breakthrough pain’ supply of lower dose Oxycodone.

But I ran out yesterday.  So today I was running on fumes, trying to make do with the breakthrough pain med, which is NOT slow-release so it just doesn’t work as well as my Oxycontin (contin=continuous pain relief)

And Andy just got home, at 6:30, from picking up my refill from my own pharmacy, which is across the street from Gerry’s old cancer center & pharmacy, and which stays open later.  Thank heaven.

Standing here and looking forward, to a life where I will need to take pain pills every eight hours to have the strength to just EXIST is hard.  I know there are other ways to ease pain, and I’m a huge believer in acupuncture and water therapy and exercise.  But, and this I know from my 12 years caring for Gerry, there are some levels of pain that have to be dealt with using the strong stuff.

Being from West Virginia, and knowing the effect drugs like Oxy and Hydrocodone have had on so many poor folks who fall into the pit of prescription drug abuse, my Oxy is a bitter pill to swallow (in more ways than one!)

What this guy calls the “Hillbilly mating call.”

I’m grateful that I have insurance (through the ACA, please mention me as someone whose life was saved by Obamacare when you find yourself in an argument with anyone) and I’m grateful that I live in Minnesota, where the coverage is very good.  Gerry’s coverage, ironically, wasn’t quite as good as mine is, so his co-pay was pretty dreadful.  Mine is notable, but I know how high it MIGHT be, and I’m grateful I can afford it.

Today I had Xrays of both knees because the pain has become so severe when I try to walk that it just feels WORSE than my arthritis used to feel.  I don’t know if the pain increase is in any way caused by the cancer, but the pain is so strong that I’m awakened by it several times a night, when I shift my legs and knees, because that movement is enough to send shrieks of pain up and down my legs.

After the past 9 months I’d be happy never to see the inside of a hospital again, but part of me is also wondering if a knee replacement is in my future.  I see an orthopedic doc in a few weeks, the same doc I saw 2 years ago who gave me a shot in my knee that helped quite a bit, and I’m curious to find out if this knee pain can be surgically remedied.

Adult Training Wheels

To that end, I’m actively seeking someone who cycles who has had “adult training wheels” attached to their bike.  I was pondering getting a tricycle, but in honesty I’d rather keep my Trek and use training wheels if that would work.

If you’ve had these training wheels attached to you bike, or know someone who has, and have an opinion about them, I would LOVE to hear it!  I really need to be able to get back on my bike.  I need a non-weight bearing exercise* to build up my muscles and help relieve my pain.  I need to be back on my bike!

The next step will be acquiring them, and having them attached to the bike, but one step at a time!!

*I know you’re going to mention Swimming.  I love swimming, and have no problem with it, but the pool is far from my house and, once there, getting into the pool is a bit of drama with my limited mobility.  If I could get my bike working for my damaged body, it would be available to me 24/7 and would be easier than getting into and out of a pool.

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!

 

 

It’s SNOWING!

I love snow, which is one of the reason I love Minnesota so much!  Of course, as soon as we moved out here from New Jersey the weather went nuts and now they get as much snow as Minnesota does.  Oh, well…  Live and learn!

I am at what I consider the HARDEST part of recovery.  I’m just well enough to be a little bit active (walking around the house, staying awake for stretches of 4 hours at a time, getting my appetite back) but I’m NOT well enough to act on those impulses!  My long, long walk through a downtown corporate maze yesterday made me acutely aware of how big my dreams are, and how weak my legs are.  Damn you, weak, weak legs.

I see my doctor next week, so I’ll get a reality check from him on where exactly I should be.  He told me when I was in the hospital that I was progressing nicely, but I worry.  It just seems like I’m in a holding pattern, and I have to FORCE myself to look back on where I was a month ago to truly appreciate how special it is to be able to walk WITHOUT A CANE to the bathroom.  Yippee!

I’m learning to use my medical marijuana to best effect, so I get the optimum pain relief.  Two days ago I forgot to take my 6am pain pills and I cannot believe how terrible I felt by the time my next pain pill appointment came around.  THAT is a mistake that I won’t make again, lordy how I need those pain pills simply to be able to LAY in bed, forget about getting up and walking, going to the bathroom, etc…  I hate to be reliant on them, but I’m VERY glad that I have them.

Andy and I have started a new evening ritual. She just finished the last Golden Compass Trilogy book and I have the newest Philip Pullman book on audio file (la Belle Sauvage)  So we listened to a nice chunk of it last night in my room at bed time, it was like being read to by some uber-dad who pronounces EVERYTHING beautifully.  I fell asleep, but I’ve already read (listened to) the book, so I’m cool if I miss a bit.

Andy’s been working on her leaf art, which is getting more and more compelling.  When the light is better I’ll take some nice photographs of her pieces and post them, they’re abstracts made of leafs and leaf parts, the colors are very lovely.  I worry that Andy will become so bored caring for me that she’ll be sad; I’m NOT the most fascinating patient in the world.  I also worry that she may feel she’s falling behind her friends from college who are getting apartments and jobs.  She’s got neither, she just takes care of me, and I am very grateful for that.

I don’t think I can actually go out into the snow, I slip and fall SO easily, but maybe Andy will bring me in a bowl of it and I can play around with that?  I hope as it gets warmer my legs will grow stronger and I’ll be walking outside without a cane in the Springtime!

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.