Pushing Myself To Exhaustion

I’m sorry I haven’t written for a while, my focus has been split, and I’ve been battling exhaustion.  As I slowly get better, recovery, I also regularly outpace myself.  I do more than I really should because I’m discovering every day what my new limits are.  This feels like two steps forward, one step back, which is not uncommon in a recovery.

I still have days of nausea, when I awake to the smell of chemicals on my skin and an overall sense of nausea.  Those tend to be hard days when just walking down stairs is enough to wear me out.  I make it to my chair and collapse, sweating and wiped out, fit only to read Facebook and play endless hands of solitaire to keep my mind from dwelling on my back, hip and knee pain.

Then there are other days when I wake up energized and ready to shower, days when I can get to the store and go grocery shopping (using one of their electronic carts!) and do other errands.  These are the days when I tend to over exert myself, and that inevitably leads to days that I’ve described above.

In addition to the continuing exhaustion, Oct 21 was the one year anniversary of Gerry’s passing.  We didn’t have a great deal of time to dwell on it, we were all traveling back from New Jersey after attending a family wedding, but it was heavy on all of our hearts.

Currently I’m shopping for a new home; a place where I can do all my living on one level, which also has room for both kids.  I love our current home, but crawling up the stairs every time I need to use the toilet is rough, and when my knees are hurting, I travel up to the second floor so slowly that, well, let’s just say it’s a good thing I bought poise pads in bulk.

We thought we’d found our home, but upon inspection it became clear that there were issues that needed to be addressed, expensive issues, and the seller wasn’t inclined to reduce the price.  So, regretfully, we walked away and we’re not looking at a few other homes.  If all goes well we hope to close in December and slowly move into the new home in Dec/Jan.  We’ll take our time getting our current home ready to go on the market, and by Spring we’ll be open for business.

This means carrying two houses for a time, but I feel it’s worth it for two reasons: I’m easily exhausted and I need the time for a slow move, and our agent feels the house will sell better, and at a higher price, in the Spring.  Both these reason mean that for a time I’ll be paying taxes and insurance on two houses, but – as I said – it’s an investment I’m willing to make.

I think for a time I thought I could just remain in this house until both kids were settled in their futures, and I was ready to move into senior apartment housing.  But a recent issue with my knee (both knees have advanced arthritis, one of the ‘seized up’ on a cold morning in the bathroom) convinced me that I need to make this move while I’m able to be in control of the decisions and can do it on my own schedule.

In the mean time, we’re planning a nice family Thanksgiving with Andy’s boyfriend’s parents, and I think it will be amazing!  We’re having our weekend at a rented cabin in Wisconsin, dividing up the dinner between folks.  I’ve put Evan in charge of cranberry sauce (which is pretty hard to screw up!) and I’m making the turkey and two pies.  Andy’s making stuffing, gravy will be made from the turkey drippings, and all of the other side dishes are courtesy of Evan’s mom.  It should be an amazing weekend!!

The Sunday after Thanksgiving we’re having a small get-together for the employees of ModeKnit Yarn here at my house, which should be lovely!  I was telling Kathleen the other day that, outside of the kids and her, I rarely see other folks these days.  This will be a wonderful chance to catch up with the hardworking people who have kept ModeKnit Yarn going this past 18 months while I’ve been so sick and dealing with other painful life stuff.

Last Thanksgiving I was entirely out of commission; at the height of my chemo, and brewing the infection that would turn into severe sepsis a few weeks later.  This year I feel much more like myself, not least because I’ve had my hair cut and colored and I feel more like ME, so it will be a wonderful thing to share this holiday with friends.

I’m also thrilled to be able to do the work (pies, stuffing) a few days in advance and prep the Turkey before we drive to the cabin and put it in the oven there.  I can do a bit, rest a bit, then return a do a bit more.  That’s been my strategy that’s allowed me to hit several milestones so far, so I’m looking forward to implementing it for the holiday.

As seldom as I seem to be blogging these days, you may not hear from me again until after Thanksgiving, so I hope you all have an exceptional holiday with loving friends and/or family and snugly animals to pet and love!  And thank you all for sticking with me during this really rough year.  It’s been hard, and I’ve had a good amount of loss, but I have SO MUCH to be thankful for – and I am!

Waiting & Patience

I feel as though so much of my life these days is spent waiting!

  • I’m waiting for Spring.
  • I’m waiting for Max & Sophie to get back from Europe.
  • I’m waiting for my body to heal so that I can walk.
  • I’m waiting for my balance to return so I can ride my bike!

Waiting isn’t so bad, and while I’m waiting I’m also doing exercises, getting my body stronger, trying to make use of the ‘time in between.’  Waiting patiently is an excellent exercise for the soul.

Spring comes late to Minnesota, March is generally such a difficult month because there is the tease and the promise of warmer days, followed by unexpected snowfalls.

Right now I’m waiting for Andy to get up so we can go to the DMV.  But she just told me she doesn’t feel well so we’ll be going tomorrow.  More waiting.  I’m not really able to drive myself, or I’d just head out.  I might be able to make the drive, but once there dealing with the parking, getting my walker out, getting INTO the building; all of that is a bit too hard for me still, I’m not there yet.

So I’m home today, I’ll make my way downstairs to strengthen my leg muscles and my balance, and I’ll see how I feel once I’m in the kitchen.

I keep working toward being able to stand up long enough to make pasta; I’m afraid that may still be a long way off.  I miss the taste of fresh pasta, my OWN pasta, and it’s pretty easy to make.  But I have to stand for about 20-30 minutes while I mix it and send it through the pasta machine, and that’s twice as long as I’m able to stand right now.

The year before I was diagnosed I noticed that my stamina was disappearing.  I was too tired to do many things, and found myself sitting instead of walking or standing over and over.  I just felt lazy, as if I weren’t trying hard enough.  But of course now I realize that laziness had nothing to do with the cancer that was invading and growing in my body.

So I’m trying to treat my current inability to walk far, to stand for long, to do so many things as a temporary waiting period, and I’m trying to be very patient with myself.

Patience is the offspring of Waiting.

Yesterday I discovered an online community, based in the UK, Macmillan Cancer Support, for cancer patients and their caregivers.  I may have run into this site earlier, but it just didn’t register in my brain at the time.

Macmillan seems an amazing resource for folks who are seeking answers (and also seeking online companionship on what is often a very lonely path) and I’m glad i found it.  I’ve already had a lovely response about recovery times from CODOX-M from a fellow who was also on this drug regime, and I feel comforted.

Finding and using websites like this make the waiting a bit easier.

pa·tience
/ˈpāSHəns/
noun
The capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset. “you can find bargains if you have the patience to sift through the dross”
synonyms: forbearancetolerancerestraintself restraintresignationstoicismfortitudesufferanceendurance;

Thanks, FDR! Thanks, Obama!

I just received word that I WILL be approved for Social Security Disability, and the monthly check will be enough to pay my utilities and taxes, plus a bit extra to live on, and that is an amazing thing.

I have NO idea how long I’ll be disabled, but at this point I still can’t walk well.  I just about make it to the bathroom and back, which I do at least 20 times a day for the exercise, but stairs are insanely hard (but DOABLE!) and FORGET about getting outside to move around in all this snow.

So while I’m disabled, I know that now I will not be using up more savings.  Thank goodness.  And thank you to everyone who helped us out over the past 9 months, we’ve had no income coming in since last June, so your help has been SO appreciated!

Cancer is expensive.  Even with insurance, we’ve run through over $30K of savings so far.  And it’s not over yet (although I am in remission!)  It will be over when I can move well, walk up and down stairs, and drive again!  Those are my goals for 2019!  In the mean time, I will have scans every 6 months, and those are pricey, and doctor visits on a more frequent basis; also pricey.  Insurance covers most of it, but those copays really add up when there’s so little money coming in.

But now I am proud to share the news that I am a recipient of SSDI.  Huzzah.

Beginning in the 90’s there’s been a rather loud outcry from the right about, “Makers and Takers” – the thought being that corporate heads are “makers” for making jobs, and folks who receive any kind of benefit from the government are, “takers” because they’re sucking at the teat of big government.  The truth is, ANYONE who buys a box of cookies or a bike chain is just as much of a “maker” as any industrial giant.

I have always thought that the way a government, a country, treats those in the most difficult situations is how that country should be judged.  We fall FAR SHORT of every other industrialized nation as far as healthcare goes, but thank heaven for Social Security.

The right keeps trying to destroy it, and they HAVE weakened it, but it is so vital to our identity as a nation that cares for the ‘least among us’ (income wise, health wise) and now it’s vitally important to me, too!

If it hadn’t been for SS survivor benefits, I would never have been able to attend college.  Ironically, the same is true for Paul Ryan, who has been one of the loudest voices against this benefit.  In fact, the benefit for child survivors of a deceased parent has changed, it used to continue while the child was in college, now it just ends at 18, making college just a dream for so many kids who have lost a parent and aren’t genius enough to earn scholarships.

And, the truth is, for the benefits to our society (including a better education citizenry) the cost is so low – truly!  This is a complicated issue, and my blog is not a political one (well, not usually…) but there’s been NO cost of living raise for SS recipients in over 2 years.

I feel so relieved, so happy.  I can pay the monthly bills, and have a little bit left over for groceries.  That’s really all I need, and it makes me feel insanely happy.  I will fight like hell to get back to dyeing, designing and teaching again soon, but right now I can’t stand for 5 minutes, let alone teach a class or dye 4,000 grams of wool!

The truth is, if it weren’t for SSDI and the ACA (especially as administered by my beloved Minnesota), our family would be entirely broke by now.

My life, and my financial security, have been saved by these two government programs, and I am VERY grateful.  For years I paid into SS, happily, because I truly believe, like Oliver Wendell Holmes Jr., that “taxes are what we pay for a civilized society!”

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!

 

 

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!

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.