Springing Ahead

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With the time change this past weekend, I began to think about the future. Usually, when I think about it, my mind becomes fear-filled. I’m not quite sure what happened, but this time, I started day-dreaming about the possibility of happier times. I thought I’d share some of the day-dreams that made me smile:

  • For those of you who don’t know, we’ve been house-hunting! Eventually, we will find the perfect house to turn into our own home. So, step one, find and get the house. Step two, hit day 365 post-transplant, obtain Boston’s approval, and bring Alderaan to his new home. Step three, once Aldie has adjusted to the change, we will adopt a (rather large, cuddly) canine that is feline-friendly.
  • Get Boston’s approval to play in the dirt because, although I do not have a green thumb (it’s more like the thumb-of-impending-plant-doom-and-death), I would like to garden. I want to plant giant sunflowers and hollyhocks. I want to raise string beans and snow peas. I am curious about growing Hops.
  • I am excited for the dietary changes that September will bring. I can’t wait to add honey to my tea! I miss honey—just like I miss Goat and Feta Cheeses. Some caramel popcorn would be nice, too.

I am well-aware that you cannot live in the future. We must live in the present. And, yet, in this present moment, I am tired of living in fear of another relapse and/or developing some secondary cancer. This isn’t my first rodeo with cancer, so I know that these fears will never entirely go away. I can, however, choose to ignore these dismal thoughts (unless it becomes apparent that there actually is something wrong with me). Instead, I can summon courage and stubbornness, boldly filling my mind with springtime sunshine, daisies, and the chirp of robins.

We were supposed to go to Boston this coming Wednesday for a check-up, but as many of you probably already know, we’ll be getting a Nor’easter instead. So, we’ll be playing it safe and staying home. I know I don’t really get a say in this, but I refuse to die in a car crash on my way to a cancer/transplant appointment. I mean, how ironic would that be?  So, no. No Boston this week, but I will call later today and reschedule the appointment. Please send light and love.

 

With Love,

Laura

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May Flowers

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As I write this, afternoon sunshine fills ours porch—and it warms my skin, the borrowed blood and platelets in my veins, my bones. The last few days, in fact, have brought an unexpected amount of sunshine and good news:

  1. My last IT chemotherapy infusion through my Ommaya Reservoir (unicorn horn) came back cancer-free—meaning I now only have to have one IT infusion per week for the remainder of Course II. We are now one step closer to Boston and one step closer to bone marrow transplant!
  2. I had my first ice cream of the summer and it was delicious.
  3. They weren’t impressed by us, but we were able to visit with Wallace the Wonderful and Alderaan this weekend.
  4. Seth and I are now engaged!!!!!!! For a variety of reasons, I was having a rough afternoon emotionally this past Friday. Sometimes the ugliness of this situation sneaks up on you, but it’s those moments—when things seem at their toughest—that the really good things happen. My (now) fiancé got down on one knee and proposed to me (with a ring that has apparently been hidden somewhere in this apartment for a while. Considering that I fold and put away the laundry, I know the ring wasn’t in his sock drawer).

All of these good things—combined with the warm sunshine—they are utterly overwhelming and wonderful. In many ways, I feel as though I have grown accustomed to hardships, to disappointment, and yet, in the course of a few days, my heart has swollen up with happiness again. April’s showers might just bring May flowers after all.

Seth and I ask, though, that you continue to keep us in your thoughts. While any step closer to Boston is a positive step, it is also tremendously terrifying. I discovered late this past week that upon my arrival in Boston, I will have to have a Hickman Catheter placed on the other side of my chest. It’s my understanding that the Hickman Catheter looks like a super-sized IV. It will have three nozzles hanging off of it; two of these nozzles will be in constant use (chemotherapy, the actual transplant, while the third will be used only if I have difficulty with nutritional in-take). My power port will also be accessed at all times. I hate the idea of having yet another device—especially an external one—but in this instance, I have no choice.

(I will have to, at some point, write about the hit your self-esteem takes during cancer treatment—just not today.)

We also ask that you send good vibes that a donor is found. Unfortunately, my brother was not a match for me, but we have been informed that there are multiple potential matches in the National Bone Marrow Registry. The search is on!

Please continue sending light and love. It is so, so appreciated.

With Love, Laura

Chomping on the Bit

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Dear Readers,

I have been an inpatient on the cancer floor for over 3 weeks now.

I’m not sure where the time has gone…or, really, how I’ve spent it. I’m at a loss for what I’ve been doing or how I’ve been surviving this. Time seems to move both slowly and quickly here, measured not so much by the date on the calendar but by blood counts and chemotherapy drugs. It’s measured in new hardware—a chest power port and the Ommaya Reservoir in my head—and the fact that I can now strap on my own leg brace without assistance. It’s marked by meals that are starting to taste like metal. It’s spent coloring and reading three pages at a time (because the Ommaya still gives me bouts of motion sickness).

I look out the window a lot.

There’s an office across the courtyard and at this time of day, when the security lights are on but before the sun rises, I can see inside of it. There’s artwork on the wall and a vase of giant red flowers. I think I can make out the corner of a well-stocked bookshelf. It’s the sort of place that’s perfect for writing, for quiet contemplation.

Contemplation is something that I have been avoiding recently. True, being ill might be the perfect time to take stock of one’s life, reassess goals, make bright and happy plans for the future—but those hopeful thoughts have shadows.

What if the treatment stops working?

What if I never get to go home?

What if this is what the rest of my life looks like—tubes hanging out of my chest, 6 am blood draws, massive doses of steroids?

I want to live. I want to see what life is like on the other side of this…but, if I am being honest, I still don’t have the strength to endure this treatment. There are days when I think that I might have the resolve to do it—that there’s some steel left in my soul—but then there are mornings like this morning, and I know I am drained. There’s barely enough fight left in me to take a sponge bath or choke down a carton of milk. I know I still need you, Dear Readers, spoon-feeding me encouragement and strength. Prayers work. Good vibes mean something here; they permeate the hospital walls, they chase gloomy thoughts to the far corners of the room, they make the minutes pass a bit more gently. And I wouldn’t be here without them.

Without you, I wouldn’t be making progress.

The week ahead may look different for me. There’s chemo involved, of course—and heaping helpings of steroids still—but there is a small chance, Dear Readers, that the next step in the process has arrived. I may be discharged from the hospital as early as this afternoon (if treatment goes smoothly and if we can be exceptionally persuasive).

Am I excited? I am so very excited at this small measure of freedom! I will be free to leave the confines of the hospital, returning to the outpatient cancer clinic at least three times a week for both the heavy-hitting chemotherapies and injections into my Ommaya Reservoir (because, although the tumor is shrinking, it’s still there, circulating cancer blasts in my central nervous system). I will reside at the wonderful Hope Lodge—a move that will allow me to share the same room with my significant other, to have some comfort even though I am far, far away from our apartment, from Wallace the Wonderful, and from Alderaan.

Please pray that this change happens, Dear Readers. I will miss my inpatient care team, but in many ways, since this possibility was first mentioned, I feel as though I have become more and more horse-like, chomping on my bit. It’s as if the windows that don’t open now have drafts and I can smell the promise of spring. I need more of it. Please continue to send well-wishes. Please keep us in your thoughts.

You are carrying us through this process—one step at a time.

 

With Love, Laura