So here we are. This is the phase of the process where all of the things have been done to our bodies to wipe out the troublesome immune system that was and put in the seeds for the immune system to be.
We restarted our filgastrim injections again two days ago to continue to stimulate stem cell production. We also get blood draws every two days him him to assess the level of current level of annihilation.
After each blood draw we meet with a hematologist to get our status report. Healthy neutrophil levels are 4000-12,000. First blood draw line rough 1500 pain, after the second blood draw they had dropped to 600. This is expected and there is an anticipated further drop in two days before the numbers begin to climb again. After the first blood draw my hemoglobin levels were 7.9 where 12 is considered the lowest end. My platelets were also low. All by design. At the second blood draw my hemoglobin and platelets had begun to recover, which is great. These red blood cells are not the target of the treatment and having them so low leads to pretty significant exhaustion and anemia.
After Sunday, the climb backing out of the neutropenia hole begins. When our neutrophils reach at 4000 level, we will get an infusion of rituximab and be ready to head home.
Now is the time for wallowing. What this means right now is that I am in the nadir of suck. Anemia causes headache, not for everyone, but definitely for me. It also causes extremely low energy. So, wallowing. And boredom.
In addition, we are incredibly susceptible to even the smallest type of infection so for the most part we are restricted to our rooms. I get to escape jail for 20 minutes a day to go to the rooftop. All of us stretch it past that 20 minutes because well, sanity.
Lots of movies. Eating in the room. It is a pretty sorry state when getting out to get an injection feels like fun. We all linger, see how everybody’s doing, compare numbers, and just enjoy each other’s company for these brief moments when we can be together.
All in all, this is this surreal stretch of time. I am literally aching to be home. I am dreaming of the mountains and the ocean and rivers and streams and sunshine. At the same time I am so weak that sorting puzzle pieces requires a nap.
I am living in dreams of the future where things are possible, where I can move and begin to build strength hopefully on top of a system that isn’t fighting back. These dreams inspire me and they make me cry as they feel both so close and so far away.
I am in love with the people I’m going through this with. There is a lot of laughter and empathy. I will miss them and hope to connect in far-off lands down the line.
For now I lay low to protect myself, wash my hands more times a day than I can count, and rest while my body rebuilds.
Hang in there my friend. I will join you in dreaming of a future where so much is possible for you.
I look forward to you being a part of that dream! I’m glad to hear you are finding health again. What a ride.
My heart’s with you for each of these steps, Elisha. Most of it is foreign, but what you describe now is familiar. Very hard to inhabit space/mindset other than the symptoms, so bravo to you when you can! That helps so many things, with ripple effects, teaching your mind, body, and spirit what it feels like to live again. What a profound journey you’re on, luv. What a profound person you are.
I am grateful for your words, and sad for the resonance. It is so difficult to live in a body that is so tired and I can’t imagine how are you embody it. Love you sister. You are courageous.
Dearest Elisha
I am amazed you have the energy and focus to write to us all. Lucky us. You are such an inspiration. Yes, life is within you.
You are transforming indeed! Much love to you as we hold you in our hearts!❤️
Thank you for holding me, and us, in your thoughts. It was hard to hear that you were struggling for so long with Covid. I hope you have emerged and feel strong. Love you.
Dear, dear Elisha,
I am imagining the light of these full moon nights surrounding the rooms where you are lying and bringing healing right down thru your head into the rest of your body. May that light stay all around you and be filled with the love that we all are sending you.
From here, the purple sprouting broccoli is beginning to be harvested. Wild currents seem to be unpacking their sweet pink packages. there are 2 daffodils blooming at the pavilion across from the clubhouse. The loons are still gracing the end of the dock. Chocolate chip cookies are on the counter at the store Tuesday, Wednesday and Thursday. The chartreuse of spring is bursting forth. I carry you with me to the end of the dock each morning.
Love, love, love
Thank you so much Kathleen! These tastes of home are so visceral and means so much. I loved every drop of sight and sound and heart.
We are thinking of you, courageous soul with an abundance of hope in our hearts. ♥️
Thank you for reaching out. If you have a moment, I would love to hear any updates on your story.
“Nadir of suck”…yep. I see you, m’dear. *distance-hug*
I feel the hug, love you.
Wow – Really an incredible process. Thanks for keeping us posted. I’m very impressed with your attitude and writing. Hopefully it’s all up from here.
Thank you for reading! I feel the hearts of those out there and I am so grateful.
Really great to hear that your on your way back. Sending you love. I really appreciate your updates. Wishing you strength.
It will be so nice to have you home, you beautiful strong woman.
Spring will unfold around you, literally and metaphorically. New beginnings. Growth.
Your courage and tenacity are awe inspiring. Thank you for taking us along in your journey.
Sending so much love and healing to you ❤️
So thrilled you are coming Home! We can be thinking about the meals we can bring you with a wave through the window😘
Dearest Elisha,
This poem materialized literally about an hour after I read your entry. I realized it came just for you. All my love:
John O’DONAHUE
BEANNACHT
On the day when the weight deadens on your shoulders and you stumble, may the clay dance to balance you.
And when your eyes freeze behind the grey window and the ghost of loss gets into you, may a flock of colours, indigo, red, green and azure blue, come to awaken in you a meadow of delight.
When the canvas frays in the currach of thought and a stain of ocean blackens beneath you, may there come across the waters a path of yellow moonlight to bring you safely home.
May the nourishment of the earth be yours, may the clarity of light be yours, may the fluency of the ocean be yours, may the protection of the ancestors be yours.
And so may a slow wind work these words of love around you, an invisible cloak to mind your life.