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!

Nadir

My oncologist used the word “Nadir” to describe the point I’m at right now, which sounds more poetic, and a bit more scary, when said with a Czech accent.  Hell, LIFE is better when said with a Czech accent…

The process I’m going through is very similar to what we experience when Gerry had his Stem Cell Transplant in 2007.  For a period of time, his body was built up with blood transfusions, antibiotics, platelets, and then he was left to let all of that goodness pump him up.

THEN they came back at him with an extremely high dose chemo, although his infusions were just over 3 days.  They basically took a baseball bat to his immune system, trying to keep him as strong and as pain-free as possible during the chemo

My own chemo took place over 5 days, 1 day off/ 1 day on, so it waa 3 full days of the chemo, but divided up to make it a bit easier to deal with.

In my case, it wasn’t until about 5 days after my last chemo, or Day 10, that I began to feel REALLY terrible.  Days 7-9 were pretty low, but Day 10 was hellish.  I’ve been unable to eat simply because I cannot stand to smell food, so I’ve been getting my calories from the Kirkland protein milkshakes, which seems to be working well.  I can keep them down, and they fill me up enough that I don’t wake up hungry.

Recently I’ve been adding cut up apples a few times a day, which is so comforting.  I love Apples.  I can also keep them by my bed, cut up and ready to eat, to snack on when I wake up.

Today’s experiment is a roast beef sandwich that Andy’s bringing.  I’m hoping the smell is not too strong, and that I can get a good bit of the sandwich down!

I could use the energy boost of a good roast beef sandwich; I’m SERIOUSLY exhausted (but better than I was yesterday.) The exhaustion is very, very difficult to deal with.  The Physical Therapy folks would like me to get up and walk around a bit each day, and that’s a valid goal, but the energy involved in managing a walker and my IV pole can be absolutely nuts.  I took a short walk yesterday, and was proud of myself, but once I got back to the room I crawled into bed and did NOT move from position I landed in for over 6 hours.  Just me, clutching the covers, waiting for a bit more energy.

Monday I’ll be getting a Bone Marrow Biopsy in the OR so they can sedate me (I’m nothing but trouble…) and I am crossing my fingers that whatever positive numbers they’re looking for in my marrow will be bright and shiny and perfect!

The goal we’re working toward is a Bone Marrow Transplant, which is what Gerry had, although I haven’t talked about it at length with any of the oncologists.  They — wisely — adopt a ‘wait and see’ attitude so we’re not putting the cart before the horse.

Well, speaking of horses, my lunch is here and I’m ready to strap on the feed bag.  Wish me luck as I attempt to have a roast beef sandwich!  Thank goodness for Andy!!

 

I Have Achieved Exercise Bike!

PT

The past two days I’ve felt a bit under the weather for PT, but today I was feeling much better (odd, since I got my final infusion of the bright purple Vyxeos last night) so a different PT fellow walked me down to the gym (a workout in itself, at the END of the hallway.  Once there, joining another patient with leukemia who was on the treadmill, I was allowed on the bike and did about the equivalent of a round-the-block ride.  Amazing.

That was it for me.  Back to the walker, back to the room.  My goal is to keep my heart rate below 122 while I do this, nice to have goals.  And to do a tiny bit more each day if I’m able.  I’m not going to push myself more than I feel is good.

The attitude toward PT here is much more realistic and nicer than at St. John’s.  There I felt that from the moment the PT’s walked into my room I was a disappointment, never walking far enough, etc.  It was sort of one-size-fits-all, or it felt that way, but this feels a bit more tailored to me.  And we all know that something tailored is much more flattering!

KNITTING

More knitting today, and I have to write up my Sellers Disclosure for my house.  I’m so happy that it’s moving apace, and SO grateful to Cami, Ken, Andy and Natasha for working together to get the final few things done at the house so it can go on the market.  You will never realize the burden you’ve taken off of my mind!

UPDATES

One of the really nice things about U of M Med Center is the update they give me every few days of my condition.  It’s so helpful to see how my caregivers are viewing me, and I see hints in there as to what they’re hoping to accomplish in the near and far future.

think I’ve noticed where they’re discussing a bone barrow transplant in late March, but it’s in med-speak so I have to discuss it with someone who knows.  Having a date assigned seems odd and scary, I remember how long the lead up to Gerry’s was (we were preparing at the Mayo from June to Sept, when he got the actual transplant on Sept 1)

VISITS

Today my Max comes home for a visit, and I get to see my Andy for the first time in several days!  Andy and Evan have been at ‘Camp Chain-Saw’, where they’ve been learning the ins and outs of some of the equipment they’ll be using this Summer for their Conservation Corp jobs.  Max is taking the bus down from Morris this evening, it lets him off on the University campus, about 20 min walk from my hospital (convenient!) and will be staying over in the pull out bed I have in my room for just such an emergency (VERY convenient!)

I cannot want to see my kids again, including Evan (not really MY kid, but he has a way of really growing on you!)  I hope Evan is doing well with all of the Americorp stuff.  In a perfect world (where’s that?) it seems as though this may be a very nice ease-into a job situation, something everyone should have experience with, a rite of passage!

I’ve asked Andy to bring a buttload of stuff (a mug, toothpaste and shampoo, different clothes) to make my room seem homier.  As of today I am OFF of the drip, although I’ll keep the PICC line for blood draws, etc.  Since I have more movement, I want to make my room seem a bit homier so I’ve asked for my “pretty quilt and sham” to come in.  I hope it makes everything seem brighter and happier!

MEALS

The food here is great!  Seriously, very good stuff!  Aside from the whole wheat pasta, which tastes like toilet paper roll, everything’s been delicious.  My favorite is the butter crust cod, so good, especially with the hash browns for breakfast!  YUM!

Sometimes, though, even the thought of just ORDERING the food is enough to make my stomach flip, and I am SO grateful to Andy for bringing me the Costco milkshakes that have kept me going during many, many periods this past year.  Good protein, low sugar, decent carbs, and a very good price.  Gerry would be proud.

Three Lovely Guests

It feels as though I’ve been in UM Hospital for a week, but it’s only been 4 days.  They’re exceptional here, and I may be most impressed with my physical therapist.  He knows how to get me to do good, steady work, and is steady with his praise.  Today he said I’d shown so much improvement since yesterday that if I do this well tomorrow I may get to walk to the gym and get on the bike!

Along wit that crazy news, I had three excellent visitors today!

LONDON

My friend London came by and brought me home made sugar cookies!  We had the loveliest chat, life and kids, and she made me feel almost normal!

London and I have been friends almost since the day I moved here, her daughter is Max’s age, and she and Todd have been very important in our lives!  I don’t see as much of them as I’d like, I miss seeing her more, but our friendship is strong and we’ve both enjoyed watching the changes in each other’s lives as we’ve grown over the years.

NATASHA

Then my exceptional Realtor, Natasha Cujedo, once again went above and beyond the call of duty; bringing me paperwork to complete and getting the contract to sell all done and dusted.  The house is being staged even as I write, it’s looking lovely, and I think we’re well on the way to getting it ON THE MARKET very soon!

We’re pricing it, oddly, at exactly what I paid for my new house.  So after $5,000 for fees and $3000 for the move, I’ll pretty much break even if it sells for asking price.  Cross your fingers.  It’s expensive to move, but this was vital, and I’m SO HAPPY that when I’m released from the hospital after my RECOVERY I’ll be returning to a new, accessible home!

Natasha has become more than an agent, she’s become a dear friend.  Her daughter goes (went?) to the same college Andy attended, we’re in the same place in our lives and have shared many experiences, good and bad, and she’s such a straight shooter.  If you need a real estate agent in the twin cities, I cannot recommend her more highly!

ROBIN

Robin has had what I’m beginning to think of as a “signature Annie year” – it’s been bad.  After falling and doing a terrible number on her shoulder, with a year of . pain, surgeries that didn’t work and immobility issues, she’s FINALLY had a surgery that’s working well, and she looked more rested and less in pain than I’ve seen her in a few years!

Unfortunately, the day she made her appointment for her surgery, it was discovered that her dear, dear husband, Jack, had a tumor in his colon.  He was in such bad shape that his hemoglobin was at 5.  After building him up a bit, he had surgery and is now undergoing 12 rounds of chemo. GO JACK!

Add to this the deaths of several dear aunts and Jack’s mom in hospice, and you have the portrait of a care giver who is at the point of being stretched too thin!  Thankfully, the cancer center where Jack’s getting his chemo is very close to their home, which makes everything easier.  Robin brought me yarn and needles, and I’m happily knitting up a Slippy Cowl to keep my fingers in the game.

I find myself wondering if this hospital allows dogs to visit.  I’m thinking probably not (I’m in a sterile ward) but I would give so much to see dear Jasper and get some puppy love!  My three wonderful guests were a great substitute, though, and I’m grateful they braved the U of M parking garage to come and see me!  Note: If you do come, there’s valet parking here, and I think they validate at the nurse’s station!!