Catching Up

I haven’t blogged for a while, so this is a kind of catching up post.

I’ve also been fighting off mild depression, which has felt as though it’s been ‘catching up’ with me every day.  I guess it’s time that I dealt with it, apparently many folks are dealing with a mild, persistent sadness while we’re all in lockdown for an unspecified time.

A large part of the sadness is due to the ongoing cancer, the new diagnosis of Leukemia (well, new in February) and feeling as if I just can’t get past this damned disease.

The current plan for my leukemia is one HUGE and very tough round of chemo while I stayed in the hospital for 7 weeks.  That part is over, and I’m glad I’m done with it.

Then two further chemo sessions were planned, as an out patient, with recovery at home.  I’ve finished one of those sessions and have one to go, but I’ve had a rougher time getting past the side effects of the second chemo session than anyone expected.

The third (and final) chemo session was supposed to happen 4 weeks after session #2, but it’s still not been scheduled.  I’m having a tough time getting my platelets and hemoglobin up to the levels needed to go forward, and I’m having a tougher time with the side effects of the myriad drugs I’m on (many are prophylactic, to fight off fungal or viral or bacterial infections). I’ve had a great deal of exhaustion and dizziness recently, so I made up a spread sheet of all of the side effects I’m dealing with.  Yep, no wonder I’m dizzy…

I have no idea how long I’ll be on these drugs, but considering I don’t even have my final chemo scheduled, I’m assuming it will be quite a while.  I was switched from Prozac to Cymbalta to deal with my depression, it seems to be working well.  I’ve just started a search for a therapist I can visit via Zoom, and I’ve returned to the Living With Loss group at the local Gilda’s Club (also via Zoom) and it felt very good to see my old friends in a grid on my computer screen.

But I haven’t really had a chance to ride my trike, and that’s become a symbol for recovery for me.  I went out and sat on it once (which winded me terribly!) but I haven’t actually pedaled it yet.  I know I will, I can visualize it, but it’s important to be honest about what I’m actually able to accomplish.  When you have intimate knowledge of what you can and can’t do, sometimes the well-meaning cheerleaders are hard to listen to.

Cancer is a marathon.  That analogy works better for me than cancer being a battle, or a war. My own cancer has felt like several marathons, one after the other.  I’m definitely in it for the long haul, I fully expect to make it to the finish line.  The kindnesses of friends on FaceBook and Twitter are like those cups of water that people hand to runners as they breeze by.

This marathon takes focus, just like riding up Ramsey Hill in the St. Paul Bike Classic (which I used to participate in every year.)  The well-meaning folks screaming support to the cyclists from the cliff at the top of the hill have always had the opposite effect on me, they would make me break my focus, lose my rhythm, finally I would dismount and just walk my bike up the final 100 feet to the top of the hill.  I guess I’m not a ‘screaming support’ kind of person.

Today I showered.  Those of you who’ve dealt (or are dealing) with energy sapping conditions will understand what a big deal a shower is.  I still can’t stand up for a full shower, I have a blue shower seat that makes full body washing possible.  I always feel like Wonder Woman after a shower, albeit Wonder Woman with a bit of an energy problem.  I’m going to attempt a short walk later today, but first I’ll sit and gather myself, allowing my energy to regenerate.

And that is what makes me sad.  I feel like I’m living in Groundhog Day.  For almost 2 years I feel as though I’m doing the same things, getting poked for labs, tests, scans, physical therapy when I’m too exhausted to stand, celebrating getting my own breakfast as if I’ve just cooked a banquet for 100.  I’m tired of being this person, this weak, sick, overwhelmed person who tries so hard to see the positive in my life.  I’m tired of the peripheral neuropathy in both legs that makes me feel as if my limbs have constantly ‘fallen asleep.’

I know how fortunate I am, I really do.  I try to honor that, and mention it whenever I get the chance.  But at the same time I’m sick to death of being so close to death.  And at the same time I realize there’s nothing to do but accept my current situation, try to make the best of it, and live as fully as I’m able to.  Which means constant nausea and dizziness, sleeping 18 hours a day, getting blood drawn twice a week and regular infusions, and continuing to wrap my mind around life without Gerry.

And there it is.  The hardest thing in the world to deal with, the thing that makes the cancer feel like a personal attack at times, instead of just an unfortunate roll of the dice.  Missing Gerry is the hardest thing I do, I know it’s so hard for the kids and for his family back in NY, too.  The fact that I had 12 years to contemplate and prepare for his leaving us does make it a bit easier, it really does.  But at times the pain of knowing I’ll never hug that dear man again is almost overwhelming.

I confessed to Andy back in November that I felt as though I were going backwards.  I had been healing from the Lymphoma pretty well since finishing chemo in January.  Learning to walk again, applying for and actually getting a job (which I had to walk away from because my health began to deteriorate – my first hint that something was going wrong.)

Andy, already devastated by the loss of their Father and exhausted in their role of ‘caregiver of the house’, wouldn’t have it.  “You’re FINE, you’re getting better.”

And I felt guilty for bringing up my fear that the cancer was back.  But the cancer was back.  This time as Leukemia, brought on by the chemo that had destroyed the Lymphoma, which is apparently a not uncommon situation.

I’m tired.  I’m scared.  I want to live for 40 more years so I can see Halley’s Comet.  Some days the fear is overwhelming, hell, I’d settle for 10 more years, I’d love to see a grandchild someday.  Recently the exhaustion and fear have been haunting me, I think I’m feeling the miles I’ve already run, and I need to be better about pacing myself.

And, of course, I have a great deal of joy in my life, too.  Being with my kids, laughing with Max, hugging Andy, all of us enjoying a game of scrabble or a piece of chocolate cake, these are golden moments.  I love our pets, and they show me so much love that I KNOW they understand that I’m not 100% healthy right now.  The new house is lovely, the previous owners were gardeners and we’re the beneficiaries of their hard work!  I have a lilac tree and a hydrangea bush right outside of my bedroom window.  Now if we could only get ourselves unpacked…

Professionally, I’m submitting a few designs to Interweave Crochet tomorrow, and I may send some submissions to Vogue Knitting now that Norah Gaughan will be the new editor-in-chief.  I feel so happy and hopeful about this, my mind feels clear enough to handle the mental gymnastics required to create a pattern.

And, of course, I have that tricycle just waiting for me to ride it.  Until then, I have my walker, and I’ll be off for my walk this afternoon.  Maybe I’ll take the dog and ask Max to join us…

New Wheels!

The difference in how I’m doing right now is nothing short of a minor medical miracle.  Or maybe the miracle is my kid’s love, and all the good food and REAL rest that I’ve been getting at home!

Chemo Knitting

Yesterday my doctor was pretty much astounded at how much better my hemoglobin and platelets are doing.  HUZZAH!  Aside from just being happy that I’m doing so much better than I was, the main reason for wanting my numbers to be so great is that I’m starting chemo again.

The last time I started chemo I was in dire straits. My numbers were horrible, I couldn’t keep ANY solid food down, but it was imperative that I began chemo so the docs went ahead and put me on a 1 week regime.  It kicked my butt.  Because I started with such poor numbers, and because the numbers just weren’t getting that much better while I was at the hospital (especially after Andy wasn’t allowed to visit and slip me a roast beef sandwich ever now and then) my numbers did go up, but they seemed to just stay at a certain point.

For the last few weeks in the hospital I barely ate anything but crackers and Kirkland protein shakes (which are MUCH more delicious than Boost, and have great nutrition!)

Fast forward to my first day coming home.  It was a challenge to ride in the car without throwing up.  We got home and it took both kids to get me up the stairs and into the kitchen.  After a rest, Max practically carried me to my bed, where I stayed for days.  I had to use the commode in my room for a week because I couldn’t make it to the bathroom.

This week I am up fixing my breakfasts and lunches (I can’t do dinners because I’m pretty worn out by then…). I walked up and down the block this week, and I baked a cake for the kids on Sunday.  I pretty much did it all sitting down, but I baked it!!

It was in celebration of PAYING OFF THE MORTGAGE ON THIS HOUSE!!  Actually, we had paid off the mortgage on our LAST house, so this was simply the point at which the check from selling that house finally cleared the mortgage company on our new house, but it means that except for utilities and taxes, we’re set every month.  It makes the expenses of cancer much easier to bear.  The joys of downsizing!!

Baking Cabinet

We have a bit less storage space in the kitchen, so our solution is a baking cabinet.  Every thing that has to do with baking goes into our new Ikea cabinet, standing against a bare wall in the kitchen.  Max and I transferred pertinent items, freeing up more built in cabinet space.

This house is definitely smaller, but oddly, both kids have much larger living spaces.  The trade off is we don’t have a dining room, but the kids and I find ourselves gravitating to the kitchen table and sitting and talking quite a bit, so it’s a happy trade off!  We have SO MANY BOXES still to unpack, but that’s also the function of moving into a smaller house.  Figuring out where to put stuff is a bit of a nightmare.  I was in the hospital for the actual move, had I been home (and healthy) I could have directed that a bunch of stuff get tossed out.  But now that it’s here, it must be dealt with!

NEW TRICYCLE!

But the BIG NEWS that I’m so excited about today is that last night I participated in my first online auction (by a local auction house, not ebay…) and I got myself an adult tricycle!  It’s one of the brands I’d been looking at, and the price of the trike, put together and ready to ride (did I mention it’s brand new, never ridden?) is less than the price of buying the same bike ANYWHERE.  And once I purchased it, I’d have to pay $100 assembly, but that’s taken care of!

Kathleen pointed the auction out to me, and also reminded me that WE HAVE A TRAILER for our biz that we can use to bring the trike to my house.  I can’t pick it up until the full STAY AT HOME directive is lifted (which is set to be May 4) but it’s being stored locally, and it’s MINE!

Today I have my first in-home Physical Therapy session in an hour and ten minutes.  I’m psyched, but I wish it were NOT raining because I’d like to show off my walking-with-a-walker distance tricks!  Instead I’ll be showing the therapist that I can stand up, sit down, put dishes away and get around the house well.  Stairs are still an issue, but slowly we’ll overcome that, too!

Signing off, future posts may be less positive as this second round of chemo takes hold of me, but we’re hoping that since I’m going into it so much healthier than before, the nadir will not be as low as with my first round of chemo.

Two Weeks At Home

HOME!

Tomorrow will mark the second week that I’ve been at home!  I was in the hospital at U of M Medical Center for 7 weeks, and for the last 4 of those I wasn’t able to have any visitors, so it was an enforced isolation.  Being at home, sheltering in place, feels like heaven.  And mentally, it’s probably good that after so much time alone in the hospital (except for the magnificent nurses and doctors!) only interacting with my kids is much easier than dealing with more people.

In short, I may be the only person who is actually ENJOYING being at home.  I’m sleeping, I’m taking my walker for very short jaunts around the house, I’m doing chair yoga and I’m reading a LOT!

My time in the hospital was rough.  At the start of my visit, in Feb, I was given 3 large and strong doses of Vyxeos chemo (every other day for a week) and it took about a week for my body to react to so much poison being pumped into it.  I was low, very low.  Getting-up-to-pee-is-too-hard-may-I-have-a-bedpan low.  Insanely low.

I kept telling the (wonderful) Physical Therapist that I just COULD NOT do any exercises.  He kept insisting that I could do SOMETHING.  So I did. I threw up.  All I really needed for a few weeks was to rest, sleep, get my strength back.

It didn’t help that I had ABSOLUTELY NO APPETITE while at the hospital.  I would order something that sounded good from the dining menu, and when it arrived the smell of it would make me throw up again.  For the last few weeks in the hospital I lived on crackers and Kirkland protein shakes from Costco.  It was all I could keep down, and as a result I lost about 30 pounds while I was there.

I’m certain that, two weeks after being at home, I’ve gained a bit of that back.  My appetite is very good, everything tastes delicious!

When I first got home getting off my bed felt impossible.  We have a portable potty that I used, and even THAT was a trial, to get to it (in my room!). But I kept trying to walk as much as I could with my (Gerry’s old) walker and slowly my legs became stronger and I was able to get to the bathroom, the living room, and finally the kitchen.

I need to take a moment to say how excited and wonderful it feels to be in a home where I can GET WHEREVER I NEED TO GO with my walker.  It’s amazing.  If we were still at 1005 Hawthorne, I would be able to get to the bathroom, then to my room, and nothing else.  I seriously doubt if I could get up and down stairs the way I’m feeling, even with two weeks of “house walking” under my belt!

The U Med Center has been wonderful in providing me with a visiting nurse service so I don’t have to go in for blood draws every other day.  Although, I did have to go in for a blood typing draw, and then return the next day for a transfusion.  That was my first week home, and just sitting up in the car felt like a victory.  Getting in and out of the house was almost impossible, I almost fell at one point and it was NO JOKE.

I never imagined that at 58 I’d be in the category of “People who need a medical assistance necklace in case I fall”. But here I am.

As the weather gets warmer, it gets more beautiful outside.  The woman who lived in our home before us was quite a gardener, so we will be the beneficiaries of her labor as flowers and the garden come to life!  There’s a hydrangea bush right outside of my bedroom window, one of my favorite flowers, and I can’t wait until it begins growing and budding in the coming weeks!

SHELTER IN PLACE

I’m in lockdown (as almost everyone else in the country is) with my two kids, which so far is pretty wonderful!  Last night we had a nice game of Scrabble, and Wednesday we actually sat down for a dinner together (not a Seder, I just don’t have the energy) and chatted like old friends.  Max spends a great deal of time working on online classes (he’s a senior at U of M, Morris Campus) and Andy is spending a great deal of time – sleeping!  Which is fine, because they pretty much wrangled the entire move on their own, and have been working hard.

I spend my time sleeping (I need at least 18 hours of sleep a day, which sounds insane, but rest is how I will heal!) and reading.  Sitting up is still difficult, but I’m forcing myself to do it at least 3 hours a day.  I did a bit of crochet the other day, but my heart wasn’t in it.

BIG DECISION

At this point, according to my last bone marrow biopsy, I’m in what they’re calling “complete remission” – which is great!  So my recovery is as much healing from the chemo as it is healing from the actual cancer.

But I have a big decision to make.  Should I get a Bone Marrow Transplant (BMT).  Gerry had one in 2007, and they’re NOT FUN.  It would mean going back into the hospital for at least 30 days, and right now the best doner that we’ve found so far is Max!  There are millions of doners in the registry, though, so they’re searching to see if there might be a better match.

The BMT would rid my system of virtually all of the leukemia cancer, and thus set me up for years and years of happy, cancer-free living.  The down side is there’s a 40-60% chance I will not survive the procedure.

But that means there’s a 40-60% chance that I WILL survive the procedure.

So it’s a hard decision. Andy reminded me that when I was first diagnosed with lymphoma the chances they gave me for survival on the CODOX-M Ivac were pretty slim, so these are actually GOOD odds.

I could forego the transplant and get more chemo, then just live and hope that the cancer doesn’t return.  The life expectancy of folks who have done that isn’t great, and many of them end up going for a BMT after all.  So it’s a hard choice.

I know I’m an unusual patient, having had Lymphoma AND Leukemia, but if any readers out there have been in the same boat and have had (or haven’t had!) a BMT, I’d love to hear from you!  Feel free to email me at annie-at-modeknit-dot-com!

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.