Our first Mother’s Day was, of course, so special, and for so many reasons. First and foremost, the break we have long needed is finally here. The road to stem cell harvest was not as easy as I thought. It’s all about timing. It began with a 24 hour hospital stay with 3 big blasts of chemo. This treatment was surprisingly one of my toughest yet. I was sicker and more tired than I have been in most of my other treatments, and both side effects seemed to hang on for a long time. Following the treatment, I had to give myself daily shots of Nupegin, which stimulates white cell production and also causes my bones to release these cells into my blood stream. Asking bones to do this is a painful process. The shots, which I have taken before, make me very sore, and for four days before the actual harvest, I had to take them twice a day, which made me very very sore.

On Monday, May 8, we went into the Pheresis Unit at Beth Israel. I had a short surgical procedure during which hey put a long catheter in my neck (I down play this here, but I assure you I was anxious about this for days before, and downright horrified after it was in. Sleeping with this, or actually, not sleeping with it, was unpleasant at best. Ugh.). Immediately after the procedure (which went smoothly —hooray!), I was hooked up to the pheresis machine, which really is a pretty amazing invention. My entire blood supply went through the machine three times, and each time, a centrifuge spun out the stem cells from my blood stream. As I said, it’s all about timing, and the idea is that after the white cell plummet to zero from the initial chemo, the nupegin shots should create a spike in new stem cell development, just in time for collection. We hit it right on the money.

We needed to collect 5 million stem cells. My pheresis nurse had expected a long collection process given the amount of chemo my body has had over the last five months (chemo affects the bone marrow and inhibits its ability to produce white cells). Surprisingly, after day one, we had collected 2.9 million cells. On day two, we collected another 3 million, and Dick took me home (minus one barbaric catheter). This was great news for two reasons: 1) I could get that damn tube out of my neck, 2) and more importantly, the fact that we could collect so many cells in two days in spite of the assault my body has taken for the last five months suggests that I have strong potential for producing healthy bone marrow, and for that bone marrow to function well and quickly (at least this is how I understand it). This has hopeful implications for recovery after my transplant this summer, and for my recovery in general.

Hooray!

So home we came. The beginning of our big break—no trips to Boston for six weeks while I do my radiation treatments (every week day for 30 days, most likely beginning early next week). I was ready to hit the ground running—to make this time a little test drive of what life will be like as I begin to recover after transplant. Unfortunately, I have been held back a bit by yet another road block. For about a month now, I have had severe pain and weakness in all of my joints….I mean all of them, hips, knees, ankles, shoulders, wrists, even fingers and toes. Doctor Joyce has diagnosed this condition as Steroid Myopethy—essentially, chemically induced extreme pain and weakness as a result of the large amounts of chemo I have gotten over the last five months. Frustratingly, the condition has worsened over the last few weeks—I can barely get up and down the stairs. I can’t open my pill bottles or a new bottle of water. I cannot get up from a chair while holding the ever larger Finn. It is very frustrating and somewhat disheartening for me when all I want to do is move and create and get some semblance of normalcy back into our lives. Movement helps, so sleeping and resting become problematic. I am hopeful that with the right balance of extremely mild exercise and rest, things will begin to improve over the next few weeks. I sincerely hope to feel better before transplant, which will have me flat on my back for at least three to five weeks. Fingers crossed.

So, back to Mother’s Day. Of course, it was lovely….Dick made me and my parents a very nice lunch, Mom and I exchanged gifts, and Dick gave me a beautiful glass locket in which I can put pictures of he and Finn to get me through the isolation of transplant. Finn treated me to his first roll over….he had a little help by being on the edge of the rug, but we’ll take it for now. More importantly I think, were some conversations Dick and I had in our quieter moments over the weekend.

I finally spoke aloud some things I have known for a long time now. I take responsibility, in part, for this illness. I have spent many years working hard, really hard, at thing I really didn’t want to do, and for all the wrong reasons. I have sacrificed time and energy striving for things for the sake of achievement, or working on projects in order to be liked or to be needed. It was about vanity, or insecurity, or lack of trust that I was good enough to be loved without knocking myself out in the wrong ways in the wrong places. In this way, I believe that I created an imbalance in my body. This illness is here to teach me a lesson. I did this. I did this. There are other factors to be sure, things neither I nor science will ever fully understand. But I do have some responsibility in this ordeal. And it’s time I own up. So I spoke this confession aloud to my husband, my partner, my teacher, my hero, my soulmate. Because my mistake has cost him, too.

“How do you know this?” Dick asked me quietly. I just do. In some ways, I have know all along. I was too afraid to admit it. Dick read a book about returning to wholeness during and after cancer, and one of the therapies mentioned was for someone to whisper in my ear, “why do you have cancer?” When he mentioned this to me weeks ago, I shut down. I was nearly sick. My soul’s reaction to the question was visceral and took me totally by surprise. It’s because I have known why all along. I have not paid enough attention to the things that are real in my life—love, peace, trust, faith in the process. For as strong as people have always thought me to be, the truth is that many of the things I have worked at or achieved have come from efforts fueled by insecurity—from needing validation from others that I am talented, or smart, or wise, or important. The truth is, I am all of these things, but I have never trusted that I would be loved and appreciated for them without my misplaced and over-placed efforts.

Knowing this about myself has been an important journey. Speaking it aloud was both frightening and liberating. I trembled and cried as I let the words out. I. Did. This. But now it’s out there. First to Dick, and now to anyone else who’s interested. And now that I have put it in its place, I will not make this mistake again. I will trust people to love or appreciate me for giving what I can without wearing myself down; without cost to those I love most. I will help where I can, and recognize when I can’t, and know that it’s ok. I promise not to take my energy, my time, my love and my life for granted again. I’m sure I’ll slip up here and there, as old habits die hard, but there it is. I won’t, consciously or unconsciously, make that mistake again.

And so, of course, I hope I will begin to feel better. I hope that the universe will recognize that I have learned this lesson, and the struggle will begin to ease. I hope my joints and muscles will begin to heal, and that things will go smoothly from here on. I still have a long way to go. The transplant will not be easy. But I am looking forward to what will come after, and I know that when I look back, I will be grateful for this trial. Growth is never easy and it rarely comes without pain. I hope I have come to a new level of consciousness, and I know that I will carry this wisdom, difficultly won, into a peaceful, long life from here.

What better gift to myself on my first Mother’s Day? Not only a gift to myself, but to my son. I can give him this truth, rather than raising him in the reflection of my old wounds. I know we will al be better for it.

Love and peace,

Finn’s Mom