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.

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.