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!!

 

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!!

This All Seems So Familiar…

I can’t believe I’m back. This blood cancer thing is like the NY Mob; Just when I thought I was out, they pull me back in!

Our story thus far: In Aug 2018 I was diagnosed with Double Hit Stage 4 Lymphoma.  It was a shock, and a fearful surprise, and we rallied our troops (you readers & friends among the most vital) and we beat it, I thought.

Fast forward to this past Sept/Oct when I began feeling very tired, more exhausted than I thought I should, and my blood work numbers were’t great.  I got my blood drawn for numbers every 3 months, visited my oncologist, and had a pet scan every 6 months.

Annie & Kathleen at “The Crack”

In January the bloodwork looked even worse, and I was worried enough myself that I offered to my oncologist to cancel the vacation I’d planned, and prepaid, for myself and Kathleen to go to Hawaii.  2018/19 sucked so bad that I felt I deserved a little joy, I’d never been to Hawaii, and I got a good deal on the trip.

Dr N, my oncologist, said I should go to Hawaii.  So I did.  I felt miserable most of the time, hardly able to walk to breakfast, but it was beautiful and I could see the ocean (and whales!) from my room.  I’m still kind of pissed about that, because looking at the numbers I feel that he should at least have requested a pet scan and bone marrow biopsy before I left – there would have been time.

When I returned I DID have those two tests, the results were terrible. I saw the bloodwork on my health providers online patient portal, and it scared me. I contacted Dr. N, and asked if he wanted to see me, “today or tomorrow?” and was messaged back by his nurse that he’d see me on the 21st of Feb, as we’d scheduled.  A full week away. At this point I couldn’t walk to the bathroom without stopping for a break on the way, I was weak and exhausted.

The next day I received a call from a different doctor at my hospital, he called me to tell me that he thought my numbers and test results indicated AML Leukemia. He asked me to get to St. Johns immediately and they’d give me a transfusion.

I was there in a half hour. Good thing I rushed [/sarcasm]

I sat in the ER for 4.5 hours, then they admitted me, still no transfusion. The next day; still no transfusion. Dr Shanks had a talk with me and told me St. John’s wasn’t the hospital for me. He transferred me to UM Hospital, and they’ve been pretty stellar in the 3 days I’ve been here.

They stared me on my chemo regime (1 day on, 1 day off for 7 days, then 21 days recovering) and are discussing a stem cell transplant after my chemo is done, if the outcome of my chemo is good.

If it’s not, then there’s probably no need to consider a stem cell transplant.

So I’m booked into this place until the end of March, not to leave the building, and rarely to leave my room.  Everyone wears a mask when they visit me, to keep me safe, and a PICC line was inserted yesterday so I can get my chemo and do the CONSTANT blood draws with as little pain on my part as possible — Huzzah!

Goodbye, Hawthorne!

I’ve been updating folks on Facebook, I’ll try to keep this blog up AND FB as much as I can.  I know folks get news on either feed, but we like what we’re most used to!

Everyone has been SO kind to me, to the family, and we’re very grateful.  Andy’s just started a new job today with Americorp / Conservation Corp (so ironic since I had to back out of my Americorp job in September when I began feeling so low!)  It’s work I think Andy will love; lots of canoeing, clearing streams and rivers, and just general convserving; it’s what she studied for at Earlham for years!

Jasper is a very patriotic doggie

We do have worries (aside from health). We’re in the middle of putting our house on the market, cross your fingers for me that we can get that wrapped up, and the house sold soon so I can pay off the mortgage I had to take out to purchase our NEW home where I can do all of my living on one story.

Another worry are the pets.  They’ve wonderful, but they need looking after because I can’t be at home, and Andy & Evan will be spending days away training for their new job.  I’ve put a DONATE button on the upper right sidebar of this blog, if you would care to toss us $15 or $50 to help us offset the boarding and pet day care fees, it would be GREATLY appreciated!

Please click on this link to donate any amount to help us cover Jasper & the kitty’s boarding fees while I’m in the hospital for AML Leukemia treatments. Thank you!

Foxie is a Cuddler

Ginger the fat cat & [still] Gerry’s #1 fan!

Max & Nitro Cat & Stash

Do I LOOK Like Jack Nicholson?

I just had one of the most annoying—yet entertaining—encounters I’ve ever had with room service.

At the where we’re staying, they offer a “Big Kahuna” burger on the menu with SPAM and lots of other stuff.  It’s $16, and aside from the beef and spam, I don’t really want anything else that’s on the burger.

On the patio menu, which I could literally PICK UP FROM OUR ROOM WINDOW (if I had 6’ arms…) they offer a double cheeseburger for $12.  Still insanely expensive, but I can literally eat half for lunch and half for dinner, that’s how big it is.

I called room service to see if I could order the double cheese burger and they told me I can’t order it, but I COULD order the Big Kahuna burger and they’d take off the spam.

So I asked,”Could I order the Big Kahuna Burger and you take everything off but the beef and add another patty of beef and two pieces of cheese and charge me $12?

Pause while they went to talk to the manager.

Yes, they can do that.  But there’s a $5 delivery charge.

Kathleen is ON THE FLOOR LAUGHING.  She wants me to call down and order toast next.

Here are some views of our hotel, which is about all I’ve seen, because I’m feeble and sitting out by the pool for 4 hours today wiped me out.  But I’ll take it!

The hotel, and a shady place to sit!

Another beautiful redhead was at the pool.

Pigeons joined us for breakfast!

Poolside wire crochet.

Packed and Ready!

Last January I was at a very low point.

I was finishing up my chemo, which was great, but I’d lost my dear Gerry, and even though my treatments for Lymphoma were almost finished, I felt terrible.  Walking to the door was a problem, and I was relegated to a wheelchair for most of my adventures out of the house.

A year later I’m walking better, I’m actually getting out and running errands, although when I need to do shopping I STILL rely on the wheelchair/carts at Cub and Costco to get me around.  Standing, or walking, more than 10-15 minutes knocks me out and there are new pains in my back that I can’t quite reconcile.

I decided last January that I needed something to look forward to.  A trip, but one to a place where I hadn’t been, and would be excellent for someone who might not be able to move as well as I’d like.  I also wanted to take my business partner, Kathleen, because she has stepped up to the plate SO spectacularly that I felt she deserved an amazing trip, too.

A bit of searching and I found a relatively inexpensive trip to Kauai for the both of us, I booked, it, and have been paying it off for the last year.  I also, wisely, got trip insurance in case something came up to prevent us from going.

Well, something has come up.  But I’m not letting it stop me.  I’ll talk in greater detail when I return, but suffice to say I may be revisiting my journey of 2018.  With that in mind, I pondered long and hard about the wisdom of a trip right now.  But my oncology nurse said, “Go.  Have a wonderful time.  It will all be waiting for you when you get back!”

And I’ve decided to use that as my mantra!

I’m packed, we leave at 6:30 tomorrow morning (at the airport at 5:15!) and I’m filled with butterflies!  Crochet work is packed for the long flights, and I’m as prepared as I can be.  I’ve also arranged for wheelchairs at the airport because — well — some things remain the same…

Hawaii, here we come!!

A Year Out

This month marks a year since I completed my chemo last January, and in some ways I feel I’ve just been marking time.

When I look at my own recovery this past year, it seems SO slow that at times I felt that I was moving backwards.  That’s why it’s so good to have friends who only see me every 3 or 6 months, they can give me a much better assessment of how well I’m doing.

We moved this week.  We found a house that allows me to do all of my living on one floor (LR, Kitchen, BR, Bathroom all on ground level!) with a floor for Andy (attic, charming and cozy) and a floor for Max (basement, not as cozy, but he has a space heater…)  The bonus is that the laundry and storage rooms in the basement will lend themselves nicely to dyeing.  This also means that we’ll have to build some kind of wall dividing Max’s space from the dyeing space, but we have until Max graduates in June.

And, every three months I’ve been going in for my checkup with my oncologist, every 6 months I get a pet scan to make sure the Lymphoma’s not returning.  So far, so good – until today.  The numbers were a bit wacky, so I have to go back on Thursday for some more decisive tests.  I’m expecting all to be well, it’s really the only way to focus my mind and not go a bit crazy waiting for test results.

The weirdest thing is that this has been a year without Gerry.

For the first half of the year, I’m not sure I was even fully aware that Gerry was gone.  Yes, I KNEW that he had died in October, but I was spending so much of my energy, mental and physical, on just coming back from Lymphoma and sepsis that I compartmentalized his loss and worked hard not to dwell on it.

Sometime in July it really hit me hard, though, and I started attending a Grief and Loss group at the Twin Cities Gilda’s Club.  I only wish they had one closer than Wayzata, but it’s a lovely group and I look forward to it every week.

I miss Gerry, and I do feel a bit lonesome sometimes, but I’m very fortunate to have amazing kids who have promised to be with me for a few more years, and now we have a lovely house that I can actually GET AROUND IN, and where I can live a more normal life than I could in our old house.  And, mentally, I think it was probably time for a fresh start.

So I just keep on keeping on.  Walking is still very difficult, my legs are still numb from toes to waist and I don’t feel much positive movement there.  Next week my business partner Kathleen and I will be traveling to Hawaii for a long-awaited and much deserved break (she, because she’s run the company single handed; me, because I have survived!!) Boy, that feels weird, saying I’ll be leaving for Hawaii next week.  I hope I come back with a bit of sun to see me through the rest of the Minnesota winter!

Advice, From Within & From Outside

I’m not going to lie, the past 10 days have been rough. It’s probably because I overdid it a bit at Thanksgiving, but I was OUT OF COMMISSION, as in flat-on-my-back in bed, for a week.
We had the MOST amazing Thanksgiving in Wisconsin with Evan’s parents, so much good food and games, movies and fun!  We were snowed in for an extra day — and ENJOYED it — so that says a lot about our wonderful weekend!
 
The past few days I’ve been able to get up and go downstairs once or twice a day, but I paid for those excursions with incredibly nausea, headaches. Must have been the change in elevation (joke…)
 
At any rate, I’m more myself today, I actually made yogurt, and if all goes well I’ll try to make it to Gilda’s Club tomorrow.
 
It’s hard to swallow that this is still my reality 11 months after finishing my chemo. I definitely have ups and downs in my recovery, and when I overdo or force myself past my limitations, I end up paying for it afterward.
 
That’s the hardest thing to accept. I can’t push myself out of this, I have to just let recovery happen in it’s own time.
 
There’s an unhelpful voice in my head that tells me, “Other folks have ended their chemo and they’re back to their regular lives!” That same voice tells me that I’m being lazy, not really applying myself, not working hard enough to get better.
 
That voice is often joined by the voices of folks who would like to point me in a specific direction for my recovery. That’s been happening a lot this week in private emails (folks are worried because I’ve been on radio silence)

ADVICE ON GIVING [Medical] ADVICE
So, with that in mind, I’d like to offer my OWN advice for what is not terribly helpful when you’re speaking/writing to someone battling a serious disease*
 
• Please do not feel you need to comment with some new herb or mud-bath regime that a sick friend MUST do. Often those kind of “helpful” suggestions simply make one feel even worse, as though they, themselves, are definitely to blame for a slow recovery.
 
• If you know a person, and you’re friends in real life, and you’re speaking from personal experience, suggestions are easier to take.
 
• If you’re just passing along something you ‘heard’ from another friend or from the media, please keep it to yourself.
 
• Please don’t insist that your sick friend MUST try something because it’s GUARANTEED to work. Nothing is guaranteed.
 
• Please don’t try to guilt someone with an illness if they don’t do exactly what you feel they should do (a friend is now a former friend after a series of messages explaining that eating meat is DEFINITELY what caused my cancer…)
 
I cannot tell you how much I appreciate the love and concern that folks have shown me! Sometimes, though, the medical-friend advice can be a little hard to take when I’m at a low point in my recovery. Thank you for understanding!
 
*I’m in remission, my last scans have been good. But I still consider myself battling cancer as my exhaustion, back and hip pain, and numb legs are due to the Lymphoma and the chemo.