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!

Final of Four

I’m back in the hospital, and if all goes as planned this will be the FINAL TIME for chemo!

I’ve been through / will go through several bags of chemo drugs; Rituxan, ifosfamide, etoposide, cytarabine and I’m also getting “premeds” which counter the bad effects of the chemo; Mesna (to protect my bladder) and special Dexemethesone eyedrops to protect my eyes.

So many drugs, so little time.

As generally happens, the first few days of a chemo admission feel pretty darned good; I’m getting fluids, drugs and food at regular intervals, and flying high from my ‘resting days’ when my blood counts and platelets have to reach a certain point before I’m even ALLOWED to return for more chemo.  These days are as good as I ever feel during this whole cancer adventure.

After 2 or 3 days into a Chemo Admission, though, I’ll start feeling it all over; I’ll be exhausted, in pain in odd places and generally in a bad mood.  (Just like usual…)

By the time I’m ready to be discharged, I’m a mess.  Exhausted, dizzy, light headed and SO ready to get the hell out of Dodge!  And of course, THAT’S when the exit process of this beaurocracy kicks into gear and we can add another couple of hours for a parade of ‘sign off’ folks to come and see me and see that I’m okay, and they can let me go.

I’ve only been in a day and already I’m anticipating my frustration at the exit process.  Now THAT is some high dose Dex working right there.

I’ll be home in time for Thanks giving, but I definitely won’t be cooking.  I’m basing the prediction on how I’ll be feeling on my reaction to my second chemo round (which is very similar to my current round, drug wise) and the fact that my last day here (Tuesday) I’ll be getting an interthecal, and we KNOW how I love getting that tiny needle up my spine to delivery MORE chemo.  (That generally sets me back for more than a day, I’m supposed to lay flat on my back to avoid spinal headaches.)

Max comes home on Wednesday and will be having early dinner on Thursday with his oldest friend and their family, then he’ll return chez Landy-Modesitt for an evening Thanksgiving dinner with us.  This is new for us, usually we eat mid-afternoon, but we’re changing it up this year.

Andy’s the chef, and since I’m in the hospital they’ll be the head shopper and planner, too.  Andy is a night owl, and likes to go to bed rather late and get up even later, so it seems like a recipe for disaster to tell them, “Thou SHALT get the turkey in the oven by 10am…) because, really, IS that a rule?

I’ll help as I can, mainly by convincing Andy that buying ready-made foods is ABSOLUTELY EXCELLENT!  There’s no need to mash potatoes, make gravy, or make desserts when so many excellent options are available.  Yes, I have a stable of dishes that I make each year, and I’ll make them again next year, but this year we’ll have a very special menu for the family dealing with chemo and mourning.

I think we’re all a bit scared about how rough this Thanksgiving will be.

Favorite Grey Quilt

It’s only taken me over six admissions to hit upon a recipe for a much more positive experience; this time I brought my own pillow and quilt, and THIS has allowed me to have one of the better night’s sleep at St. John’s.  The thin cotton blankets they use here are SO puny, even stacking several of them up means a lot of fussing and rearranging.  My good ol’ target quilt works beautifully and STAYS PUT for a nice night’s sleep.

Oh, and my OWN GOWN!  I’ve foresworn the hospital gown, I have a gown of my own I’ve altered to allow very easy access to my port, and it’s working great!  The nurses all know me quite well now, and they’re happy to let me wear a night gown that doesn’t do double duty as a pup tent.

And pillows?  I need my pillow from home, and I have it now, and I’m happy.  And I didn’t even make Kathleen drive 25 miles out of her way to go get it…

Later today I’m going to have Andy help me rearrange my room (they’re SO used to me doing this at the hospital now, but – honestly – I do have better ideas for how to make the room flow and give the nurses more space to do their work!)