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!

7 thoughts on “Two Weeks At Home

  1. Happy to hear you are home! One of the things my Drs encouraged me to do was sit in a chair as much as possible, telling me that you use different muscles sitting and it would help with gaining strength. Will be thinking of you/your children as you make your decision concerning BMT. Thankful you are enjoying food…..I could not and lost 80#’s in 5 mos. Rest and heal!

    Thinking of you!

  2. I am so glad to hear you are home and in remission. This is great news! Take care. Whatever you decide will be the right decision for you. Wishing you all good things.

  3. I’m glad to hear you are home and getting stronger! I forgot the home move went on without you. You are blessed with some amazing kids (and their friends).

  4. I have been thinking of you and hoping you were okay. So glad you shared the good news of remission with us today. Take care.

  5. Happy you are at home and recovering successfully at your own speed! You know what’s best for you and your family, go with what is in your heart. As a 911 dispatcher, I can say that if you do have a medical pendant, please make sure to give them as much information up front as possible- many companies don’t have names, phone numbers or even ages of the patient! Hidden keys with easy and clear directions or lockbox codes, major medical no-no’s are all important, too. Think of it as if you were found in medical distress by strangers but couldn’t speak, what do you need a medic to know about how to find you and what an ER doctor (not at your hospital) to know about you right away? Information can mean a big difference in treating you.. or at least avoiding breaking down a door when it’s just an accidental activation!

  6. I’m so glad that you’re safely home, getting around, and recovering! Also that you get to see the results of the previous owner/gardener: just what you need right now.

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