At long last, spring is here, and I can tell you with some comfort and confidence that I am finally beginning to bloom. It’s been a long time coming, and about six weeks ago I secretly feared I would never feel good again. But the energy has crept back into my being—my body is waking up from its long rest. My spirit is shaking off the dust. I am beginning to reclaim the embrace of adventure and joy I used to know before this wintering time came to teach us. And this is a bloom I trust—free of all narcotics and steroids, it’s all me.

I’ve been swimming again, twice a week and shooting for 3 times a week. I have much more endurance than I thought I would. A long way to go, but I have the strength and courage to get in and work for it now. My wonderful Physical Therapist, Richelle, kicked me out of the PT nest. She said I’m too strong to go on there. Now it’s up to me.

And the sun is out. And my hair is growing into an impossibly curly mess. And Finn is walking and talking, and Dick is smiling. A lot. We’re good.

Today is my 36th birthday. In addition, it is the one-year anniversary of my first clean scans. One year down, four to go—then we can call me cured. I’m not worried. I’m blooming!

Lots of things planned— performances with the theater, trips to visit friends and family, long summer days at the lake, maybe even a summer trip to Italy. Milestones. Life is moving on.

So, I think that’s the most of it.

I like the idea of closing this site on a special day. Today is special, but truly, for us, each day is special. So I think I’ll leave it here for now. I’d like to keep the site on-line for those of you who like to revisit some of the special moments we’ve shared in the last 18 months, and by all means, if you are moved to leave us a message, please do. I’ve put some new pictures up today and I’ll plan to throw some others of our Finn up from time to time. I am graced with the privilege of witnessing his growth—from a tiny soldier within me, to a life-affirming miracle in our lives. He is the delightful proof that life goes on. And that my life goes on exceedingly well.

Please know how important this site has been for Dick, Finn and me. It has been so healing for us to share our thoughts and transformation, and extraordinarily helpful for us to read your words of love and grace. You have made a difference in our journey and in our lives. I carry the spirit of your love and words in every cell of me. Every clean, healthy, tender cell.

I remain lucky in life and light.

Love,
Heather

So much. So much. We went to to the Kripalu Yoga center for 4 days during Dick’s February break for an intensive workshop with Dr.s Deepak Chopra and David Simon. It was an immersion into Ayurvedic traditions and spirit talks about how to know the mind of God. We meditated twice a day, did yoga twice a day, ate well, and did some healing. I made some real emotional progress I didn’t even know I needed to make. I am learning to be gentle with this body. It has served me well and hard and it will regain its strength in time. The meditation practice we have kept since the workshop continues to nourish us both. Mostly, we are remembering to be lighthearted, which is a key principle in Ayurveda, for we are consciousness looking at itself, creating itself, and our souls know that what the ego needs isn’t what lasts into eternity. We came home feeling refreshed and recharged, but then I put my new expanded awareness to the test by making the first of my final two steps to getting free of Morphine. Step one was to cut my evening dose. It was hard. My body wanted. Meditation helped. One or two doses of anti-anxiety meds helped me to sleep through some of it. After 4 days I was through the worst of it, and drove myself to Boston for two days of scans and meeting with the docs.

Facing the tests is a paradox for me—there is security in knowing we are looking inside my body for signs of trouble, and there is anxiety in knowing we are looking inside my body for signs of trouble. I faced it. I meditated through my PET scan and MRI (a real test of my ability to disconnect in the noisy MRI). The next day I met with Dr. Buff and Dr. Joyce. All clean. Dr. Joyce says she is so pleased with how my treatment and recovery has gone. She is not worried about me. I left feeling energized and strong. I crashed a little when I got home, but finished the week (last week) with a great few days with the ever evolving Finn.

Last Friday I took my last dose of morphine. It was a tough weekend, but my discomfort seemed to peak yesterday (Monday). There were many tears. I am so tired pf being sick and tired. Especially after significant gains like a successful run in Winter Cabaret. But the tears continue to help me to heal. I think some days I am feeling a type of post-traumatic stress—sometimes I am just so overwhelmed by the whirlwind of the last year. Going through it, I was either doped up or just surviving. Surviving treatment to treatment. Everyone thinks I was so brave, but really, what choice did I have? What was I going to do, die? That was not a choice for me. So for a year, I just survived. Now is the time I find I’m faced with a new challenge, CHOOSING to LIVE. Choosing to know when I am really tired, or when I am feeling the chains of fear. I ask these questions and make these choices everyday. Some days I choose wisely, others I don’t. But I am learning to make the most nourishing choice for my body, mind and soul each day, and forgive myself for my weaknesses. It was so frightening and painful to leave my morphine, my ally for nearly 16 months, behind. I don’t know this body without the security and support of that drug. Nothing about this body is the same! I have had a baby. My body has been forced into menopause. I have nerve damage and a pelvis ravaged by a viscous tumor—one that MY BODY created. A mutation, a single misstep by a fragile B-cell, and a choice was made. A choice that tested my physical being, but surely serves my soul. And so I try to reflect on the pain and the gifts and the emotions come through me. And I wonder what I can expect from this new body, this new Heather. How far can I push? What are my expectations to be? How good can I feel? And the answers to these questions are of course all up to me. What I choose is what will be. So, for the first time, I am beginning to love this body. And I am learning to be gentle. And light hearted. I am always a breath away from another choice. Always. So I write to you now, clean of cancer, and four days clean of morphine. I feel a little better today. How much better I will ever feel is up to me and my own intentions. The universe wants me to feel well, to be well, body, mind and soul. What will I choose in this breath?

So going to see Deepak and David for a week broke us out of our rutted routine and expanded our awareness, and the 4 days out of his home routine did the same for Finn. He spent our time away with his Nanny and Gramps Weafer and when we came back to him, he seemed so much more conscious, so much more aware. He was more confident on his feet and in his ability to communicate. His eyes were bright. In the week since, he has taken his first, tentative steps. First between Dick and I, with embraces and kisses on either end. In the last few days, he has three or four times, let go of the table and toddled to his toys. His choice.

So here we are, Finn and I together, learning to walk again, in this world, in bodies that still hold mysteries to our spirits. The choice remains ours, each moment, to walk with confidence, or drop to the ground and crawl on the gentle supporting face of the Earth. Each journey, each moment, we choose. Each choice is a gift and is okay. And at any moment, we are a breath away from our expectations, a breath away from the stars.

So.

Before I sign off for now, I would like to post here an e mail sent to me by our dear friend, Matt Davie, who is competing in a triathelon to raise money for the Leukemia & Lymphoma Society. He has made me his “Honorary Team Mate”, and will be wearing a bracelet with my name on it during his race. He has put up a web page charting his training progress, and on it, has posted a lovely video encapsulating our story. It is a wonderful tribute to a special year for Dick, Finn and I, and we are very touched by his creativity and efforts. Please read below and check out his site—have a look at the video and cheer him on.

Thanks so much to all of you who still visit the site. I’m thinking about an appropriate end point to keep something this special from just fading away ambiguously. More on that next time. I’m also adding a few more pictures, my hair, one of my favorite wigs worn for Winter Cabaret, Finn in the tub, etc.

Love, Peace, Wholeness,
Heather

SUBJECT: MATT DAVIE’S RACE FOR THE CURE

Dear friends-

On July 22, 2007, I will be competing in the New York City Triathlon for a reason much more important than the personal challenge of completing my first 52 mile endurance event.

As a member of The Leukemia & Lymphoma Society’s Team in Training program, I will be competing to raise money for leukemia, Hodgkin and non-Hodgkin lymphoma, and myeloma research and patient services programs.

I am writing to ask for your support. My goal is to raise $2,500 by Memorial Day. This money will be used for research, patient services and education. Please give as generously as you can — even a donation of just $25 can make a difference! All donations are 100% tax deductible. Simply click on the link below to make a secure online donation to this worthy cause and learn more about my involvement in it.

http://www.active.com/donate/tntnyc/matthewdavie

My connection to this cause is very personal as I have pledged to train on behalf of my friend for over 18 years, Heather Perry Weafer. In November 2005, Heather was diagnosed with lymphoma while in the 4th month of her first pregnancy. Her strength, courage and honesty throughout her diagnosis, chemotherapy and radiation treatments, the birth of her son Finn and her successful bone marrow transplant inspired me and everyone around her. Today Heather is cancer free and enjoying every moment with her husband and 1 year old son. During my training and the actual event, I will be wearing an “Honored Teammate” bracelet with Heather’s name on it as a symbol of my support for Heather and others like her who have been affected by blood cancers.

I’ll be updating my fundraising site regularly to keep you updated on the highs and lows of my training regimen along with other news about the event, the cause and the Society. If you have friends or colleagues that might be interested in contributing toward this cause, I encourage you to forward this email on to them.

Thank you so much for your support and interest in a cause that means so much to me.

Peace, Matt

Coming soon, photos of my new hair do, and shots from my return to the stage at the Theater Project for our 10th annual Winter Cabaret! Those of you who are local, come see!

Friday Jan 26 @ 8pm, Saturday Jan 27 @ 8pm
Friday Feb 2 @ 8pm, Saturday Feb 3 @ 8pm, Sunday Feb 4 @ 2pm
Friday Feb 9 @ 8pm, Saturday Feb 10 @ 8pm, Sunday Feb 11 @ 2pm

I broke my pinkie finger in rehearsals, but other than that I’m feeling good and having a blast!

Love love love,
Heather

I’ve edited out the pictures that highlight his scabby nose…did I mention that I dropped him right at the doctor’s office? Then hung him in his car seat only hours later? Mother of the year. So yeah, his nose looks like he’s been in a bar fight but you can’t tell in these pics.

Enjoy and thanks for staying with us.

I am working to get a little stronger everyday, one foot in front of the other.

Much love.
Heath, Dick and old Finn.

Thanksgiving was lovely, quiet with family and then friends, although Finny had a troublesome cold, which will play into our story later. In the weeks between holidays, I was busy with book signing events, which I really enjoyed. Unfortunately, those efforts for me were tainted slightly by my struggle to live in a body that was not yet mine. Still under the push-me-pull-you of steroids, morphine and long-term antibiotics, I found myself more tired than when I first came home from transplant. I was very slow to start in the morning, and often never got up to speed all day. As I retreated to the couch, I retreated some emotionally, and probably experienced a little mild depression. I just felt trapped in a body I didn’t trust and had never known to be so weak.

After a year of simply surviving, it’s time to learn to live again. Really live, and commit to life. The description above is in past tense—things are better today. I am nearly off of the prednisone, and have almost conquered my dependency on morphine. This dependence was another emotional hurdle for me. I suddenly felt very angry that after all we have come through, I had to tackle a drug dependence. Mama’s a junkie. It scared me for a while, but now I have a plan to get free of the last small dose I am on, so I’m feeling more in control of things. I hope to be steroid and narcotic free by the end of February. But I’m learning that life after cancer has challenges I had not anticipated. As always, I search for balance. More on that as I figure it out.

Finn’s first Christmas? Mmmmmmeventfull….he had that cold which escalated into a bronchial event, which landed him in ICU on Christmas Eve. He and I woke up there for his first Christmas morning. Then we came home to poor Dick who was vomiting, followed by 5 days of diarrhea. So we all laid low for the week. As a matter of fact, Dick and I, in what I like to call “Slug-fest 2006”, watched two entire seasons of “Lost” on DVD. We were total potatoes. It was fun and indulgent, and really, all we felt like doing. Just as Finn started to recover from his breathing crisis (thank you prednisone), on New Year’s Eve, he started to vomit, followed by 6 days of diarrhea. The already skinny Finny was wasting away. He was listless and cuddly, but very stinky. We forced the fluids, which was no fun for any of us. Then, a few days later, I caught the dreaded stomach bug, and was sicker than I had been in a year of chemo. When my night at the porcelain began I was really afraid that this was something from which my weak body could not, would not, recover. It’s nerve wracking to catch a common ailment in a body I don’t trust yet. But I did bounce back, surprisingly fast, and lost a few prednisone pounds to boot (don’t say boot, ugh). We are all better now, albeit we are all a few pounds lighter.

So tomorrow, January 13, our Finn is one year old. It’s really hard to believe; one year ago we were in the thick of it—I was bald and pregnant, having this little miracle spring from my abdomen. He is a miracle, and he’s perfect. He’s a little skinny just now, but he is perfect. Even my docs were a little misty this week, as we reminisced over the last year—a year of amazing life! Tough tough stuff, rich and thick, Finn has come through more by his first birthday than many people do in a long life of birthdays. And now I see that smile, five and a half teeth, and I think, we did it. And we can keep doing it. In some ways, I’m learning that LIVING after cancer is harder than surviving the disease and its hideous cure. But look at that grin on that little boy. He doesn’t know how NOT to live. So on we go.

I have begun rehearsing for Winter Cabaret at the Theater Project. It’s our annual winter comedy hit at the theater, and I have worked on and laughed my way through Winter Cabaret for 10 years now. I hated to miss it last year, but this year I am back with a vengeance. We are performing the top 10 most popular short comedy pieces we have ever done, and of the 10, I am in 7! My lines are memorized, now I am just working on building the stamina to make it through the rehearsal process and performances. The laughter hurts my abs but lifts my spirits. It’s pushing me just enough and just in the nick of time.

So here we are—one year after Finn came to show us that anything is possible. Tomorrow we’ll have some cake and balloons and Finn will have his first taste of refined sugar—I can’t wait to see the look on his face. His Grammy Perry is making him a circus train cake just like she made me for my first birthday. There will be lots of pictures which I PROMISE to send along. Kimmie is here with twins Bo and Ella (they WALK!), and when the 3 babies are together in one room, we can’t believe the blessings of love and life we are so lucky to receive. Abundance.

Abundance.

It is the perfect word to sum up the last year. Thank you for giving us your gifts. You have made us so rich. In closing here, I’ll add the word Hope. It wakes me up in the morning and carries me into this new life I am living.

The Master is stirring and needs rescue from his crib. As far as he knows, it’s just another day. We’ll eat and poop, play with his cousins, laugh and nap and at the end of the day we’ll put the experience to bed. We take it as it comes, and move ever onward.

Happy Birthday to a wise little man.

Love and light,

Heather

PS. Come see Winter Cabaret at the Theater Project in Brunswick, Maine! Opens January 26 at 8PM. Runs three weekends on Friday and Saturday nights (8pm) and also two Sunday matinees on Feb 4 and 11 at 2pm. You will laugh and see that I am BACK!

HAPPY BIRTHDAY FINN!

love,
Jen

One of my most vivid memories of that week, one year ago, is actually a moment of surprising peace. I woke up in the middle of the night, my first night at the hospital and my first night with the knowledge that I had cancer. Dick was sleeping deeply in a cot nearby. I was on so many drugs, but for some reason awoke fairly lucid and reasonably comfortable for the first time in months. Everything was quiet. I have cancer, I thought. I have cancer. Unfathomable, and yet, there was a part of it that seemed purposeful and destined. There was a bag of Pepperidge Farm Mint Milano cookies on the bedside table. I picked up the bag and thought, I shouldn’t eat cookies in the middle of the night. Then, of course, I realized that that was a ridiculous notion, especially in my circumstances. I quietly, peacefully, slowly, ate four cookies. I enjoyed every bite, and even more than the flavor, I enjoyed the idea of eating cookies in the middle of the night. I had been granted a new liberation unknown to me before that. Somehow, that liberation, an unteathering from things constraining, was apparent to me almost immediately.

What should have been, or could have been, a moment of terror, a lonely, frightening scene in the middle of the night, for some reason, was the most peaceful time I had had in a long time. Perhaps because we finally had some answers—the freedom that comes with a course set into motion, and being helplessly along for the ride of my life, I don’t know. I just know that felt very calm, very much at ease in the stillness and quiet around me. I was able to sit in that quiet with the new knowledge of my mortality, and for some reason, fear was not what I felt. At least, not right then. I cherish that memory. It’s one of the only clear memories I have from that scary-wonderful week, and in my more frantic moments, now a year later, I try sometimes to channel the miraculous peace I felt that night.

I wish I had more to say today. It feels like a special day, a bit melancholy, but mostly celebratory, I think. Here I am a year later in remission and with the wonderful Finn. It’s been an amazing year to say the least. I’ll visit the ladies at Midcoast with Finn and Wendy, and have a quiet dinner. Maybe some Mint Milano cookies for dessert.

Thank you so much to all of you who have kept us company in the last year. Your words and energy have been so instrumental in the magic and power of these months. I can’t imagine having gone through this without you. I feel very fortunate to have had your attention, love and compassion. What a wonderful record for Finn to have of this special time of growth and struggle and love and evolution. Thank you.

Below is a piece Dick wrote a few months ago on a particularly reflective day. I thought today might be a good day to share it because it’s a wrap up of sorts, injected with the insights of a man who has gone from gentle and wise to even more so in the last 12 months. It’s long, but if you have the time and are into the indulgence of reliving some of the more dramatic moments in our last year, it’s a very good read. It is brave, compassionate and full of hard-won wisdom—just what we all have come to expect from Dick Weafer. I am a lucky woman indeed.

Much love today and into tomorrow.

Heather

September 23 2006

Dear Heath,

I am struck by the need to write it all down. Everything we have come through, all we know. all we are. Where to start is the rub… The journey has a few obvious starting points, but we both know the journey has no beginning and no end. What shaped you? What shaped me? No doubt the answer lies somewhere in the divine birth of our universe. I think, for us, the ground we walk on began to shake that early spring morning we discovered we were going to be parents. I remember feeling that life was going to change, that something was coming our way. We had overcome our hurdles in life relatively easily and with an innate sense of direction neither of us could name. Some of our hurdles would have ended many relationships, but for some reason we never lashed out at each other. The tough times brought us closer. Our ability to love gives us great power and we both knew it at some level. We had worked through most of our shit and were sailing smoothly when we conceived Finn. Even that act went smoothly. Both of us knew more was headed our way, something hard that would test us again and force us off the plateau. I almost did not want to have a child because I feared something would go wrong. Life was good. Why rock the boat? The deepest part of me knew something was coming. Little did I know how much God has planned for us. Some have said that bad things don’t happen to you unless you can handle them. That the divine plan of the universe is not to push you over the edge, but to push you just to the edge so you can get a better view. We fought that push hard. We had a nice little eden flowering on our plateau and did not want to see the pain, the suffering, the despair, the monumental effort before us. I still can’t believe we let you writhe in agony for months not knowing there was something seriously wrong with you. A bad case of sciatica? I blame myself for believing what I wanted to believe rather than what was right in front of me. If I just massage it hard enough it will get better. I created a false reality that cost us dearly. I did not want to pay attention or accept the fact that I did not understand what was going on inside you. I suppose the options were too horrific and unbelievable. After calling the ER that night you began convulsing from the pain and hearing the doctor tell me that what was happening to you “was not normal. You should get her in here,” I felt like my face had been dashed with ice water. Fuck, I was in way over my head and you were way out of your head. Watching Dad helping us carry on the madness that night made me realize the crazy state we were in. You had been crawling to the bathtub, sobbing in agony the whole way! What was I thinking? To this day, I am terrified to think of my potential for insanity. Though so many lessons came from those early days of this, I am so sorry I let you writhe in such pain for so long. You essentially survived the equivalent of unrelenting torture for two months. Most people would have died right then. I am awestruck because your fight had only just begun.

When the doctor called and summoned me back to the hospital I went numb. I remember saying to Dad, “Oh God, This can’t be good.” I ran to your room and into your arms on the bed. You told me it was a huge tumor in your pelvis and we both lost it. I, weeping on your bulging belly. You let me cry and told me you needed me. I remember feeling a sense of relief right then. We knew nothing more other than it was probably serious. I did know that I had the strength to do what needed doing right then. I held your hand and we did what we always do just by default. I loved you and you loved me. To some degree the knowing ended the craziness and that calmed me. By the time the docs came to talk more with us the room was full. With all the people, we did not have a chance to feel all of the fear right then. We were just living, moment to moment to moment. You even made us all laugh. I think you live your life through the tough times just as you do during the easy ones despite what you imagine will happen.

The week we spent at Midcoast was such a hard, special time. I have such vivid memories of that time because we lived every gasping breath of it. The future was too scary to imagine so we lived in the now. I remember them pumping drug after drug into you to ease the pain and could not believe it when you awoke in agony again and again. I lost nearly all concern for Finn. His heart pounded away without any sign of stress day after day. I just knew he would be fine and I remember feeling pissed that he could be doing so well while your pain just kept getting worse and worse. I remember bargaining with the Universe to take him instead of you. I think I was angry about what was being taken from us and just wanted to go back in time six months. I cried so many tears that week and learned that I could never cry myself dry. The best I could do is bottle it up for awhile. You missed so many things that week. I remember watching some of our loved ones holding you and rubbing your leg and watching you groan through another pain spasm as I had done so many times already. I had to leave. I fled the room and did not make it far down the hall before being overcome by grief. I collapsed into the wall, held my face in my hands and sobbed. Mom found me out there, lifted me up, and leaned me into her. She told me how sorry she was and stroked my hair as if I were still her eight year old little boy who took the world a little too seriously. She also told me that she knew you were going to be all right and I think it started to dawn on me then, that I knew it too. That my hope far exceeded my despair. I had so little knowledge of cancer, and we did not even know what you were dealing with at that point, but my soul was making inventory of our arsenal. I learned to notice the things and signs that felt truest. I noticed that my touch eased your pain, especially when I lost myself in it and focused on the life in you. It felt right for us to ride out what came. We stayed positive and calm, most of the time. Crowds of people came to your room as if you were dying, but I never felt you dying. Despite the drugs and the pain and the exhaustion, I never felt you waning. You simply endured, knowing better would come. These were clues. After witnessing your battle, people were moved to tears and awestruck by our family’s strength and courage. They left the room emboldened to hope. A few became disciples and couldn’t leave. A pain spasm would come upon you and you would moan and beg and get angry. We held you, rubbed you, pushed on this spot or that and out it came. You spoke your fears in great gushing cries, “I don’t want to die!” you would shout and like magic your pain eased and you could drift off for another few minutes of sleep. We were witnessing birth and death and rebirth everyday. Words of power floated about the room. Little Marie told you of her dream that “all things are possible”, and it became a rallying cry. At one point you woke and said an old man wearing a green hat told you to “Be still!” and it became a slogan. Words of wisdom came from unexpected sources. They were all signs to me. Did I dare to believe? I watched the blackness come out of you. We were all stripped bare, you more than any other. I am convinced whatever caused your cancer left you that week. It was still growing inside you, and we needed good doctors to get it out, but the cause was gone. It was the most beautiful, terrifying, and honest thing I have ever witnessed. Through you, I became conscious of the divine in us all. Was it any accident that you did all of this while a new life grew inside you? Was it an accident that from your pain only good things came? We were in the maternity ward for Christ sake! I refuse to not pay attention anymore. Everyone who left that hospital room left more whole than when they entered. These were all true and they pointed to life, not death. At one point, you were lucid enough to talk about dying. The debate was on and, in typical fashion, you were out debating everyone. It came over me suddenly that I could not let what I knew stay quiet while Fear gained the upper hand. I spoke out with certainty and proof, with clarity and deep understanding. It came from somewhere in me and I put words to what I felt in my soul. I stopped Fear in its tracks and when I was done everyone was quiet. I remember hearing Wendy crying softly in the corner because faith and hope were returning to her. To us all. Through it all I have learned that fear is a bitch. It is always around, and you can let it truss you up and sling you over its shoulder, or you can shine a light in its face and carry it in your back pocket. You just have to put up with it biting you in the ass from time to time. Toward the end of that first week I remember you waking up and grabbing me to pull me close. You whispered. “Oh, Honey. I am so sorry. You are in for the trial of your life.” You then fell right back to sleep. The words rang in me for days after. They were true words.

From Midcoast we moved to our new home in Boston where the tumor kept growing and your pain with it. Unbelievable as it seemed, your pain actually could get worse and you actually did have the best doctors in the world not really knowing what to do about it. Thank God for the nurses. It all becomes something of a blur…Fights with interns, the Pain Squad, more pain, the horror of the tumor biopsy, unimaginable pain, more loving nurses, long nights. Becoming friendly with uncertainty. “Oh lymphoma…” Do we chemo little Finn? Do we have a choice? “Did you say sixteen centimeters?” I learned to be relieved when no test results were due. It was such a joy to be able to focus on your bulging belly, but I remember freaking out when I could see the tumor beginning to bulge out of your hip. One of the best moments of those days was the night after your first round of chemo. You woke up after a few hours of sleep worried because your pain had lessened. In fact you had not slept for such a long stretch in weeks. You felt so much better and thought there must be something wrong. I didn’t say it, but I wanted to say, “That’s GOOD. Now can’t we go back to sleep? After two treatments your tumor was nearly gone. I couldn’t believe it. At this point it was mostly just the two of us and we had a lot of special moments together despite how hard it all was. In some ways it was easier for me to live on the brink. Despite how tired we both were all the time, it is amazing that we never really fought. From time to time we did our usual dance. I got tired or stressed and retreated to a book or bed and you felt the disconnection and pulled us back together. I learned the real meaning of love in those weeks. I was pretty good at it before, but it is a misperception to say that love solves all problems and that love is all roses and chocolate. It is hard to put into words because there are so many misconceptions about it. Love does not mean that you give yourself away to another, that you sacrifice your being for another. True love can only be given from the truest part of you, the part that is eternal and beyond measure. People always say to me, “Take care of yourself too.” or “I know how exhausting this must be for you.” I get reminded of all the caretakers who make themselves sick because they forget to eat and rest etc. All of that is true, but only if you give yourself away. Only if you don’t pay attention to what is being given. I would not have lasted long in this if I sacrificed my Being. If I took away from who I am. You have never asked for that either. Where then does the love come from? Where does the strength to do it all come from? It comes from me and somewhere other than me. From the people at our backs, from the look in your eyes, from the ground I stand on. It takes work to feel that kind of love for I am constantly trying to shut myself off from it. When it is there though, it is not of me, it is of us all. That sounds all special and lovely doesn’t it? It is the most normal thing in the world. The realization is lovely, but the act feels ordinary. When I get up to get you something, or to do what needs doing, I often feel a moment of tension, but by the time I have let out my first breath, I have IT in me to give. Again and again. It is the same as noticing the moment and not the effort. Choosing to not feel put upon or irritated. When has it not felt good to help someone really deserving? Doesn’t it always come back to you in some way? The act of loving you through this time of healing has awakened me to the greater love in me that I feel for everything around us. Loving you and our new little boy, of course.

Right smack in the middle of this mess came our beautiful Finn. I wish I could say it was the happiest day of my life. In some ways it was, but if we are being honest, it was a long, scary, exhausting day. The most unusual of birthing stories. Hadn’t we already given birth a hundred times by then? At the moment of birth I felt very calm. He came out of the incision squawking and purple. I am glad I got some pics because it happened so fast. One moment I was just me and the next I was a father too. I always knew he would be ok. He came out and looked good and sounded good if a tad on the tiny side. I was so proud of you, of him, of us. We had made a beautiful baby in the face of cancer. Who has had to do that? The ultimate act of creation. I still can’t believe it sometimes. He was whisked off by capable and caring hands and I knew that you needed me more than he did right then. I needed you too, I think. What had just happened? What was next? Which way do I go? People always say that the birth of a child is the most amazing thing to witness. It is pretty awesome, but honestly, I think it paled in comparison to what had come before. There is the great possibility that I was too scared to care for another as much as I cared for you at that moment, Who would blame me? Watching Finny in the Nicu was frustrating. I felt excited every time I saw him…for about ten minutes, and then I would get frustrated because he was not ours yet. When he came home, it felt like the most natural thing in the world. Hadn’t he always been there? I fell for the kid overnight. I got to know him and fed him and held him. What an oasis he was in those days. He was the perfect baby. Gorgeous, healthy, and sweet tempered. It was fun to become a parent with you. I always knew we would make great parents, but I had no idea we might make such a great kid too. I will forever be grateful that he came and rescued us from cancer. Who has time to think about death and dying when there is a hungry baby in the room? Or when they are farting in your arms, or sleeping and dreaming. Pure joy. Not to say we did not have our trying moments. Times when I did not know who needed me more. One of my lowest moments was the time you were sick in bed and I spiked a fever and had to sleep in the little bed. Finny woke screaming and I simply couldn’t carry on. Screaming son, chemo-sick wife, and a fever of 102 brought me to my knees. I called in the troops and you parents came and took over. Thank God. Why did I ever think I should handle that situation on my own even for a minute? Insanity. It strikes when you least expect it. Watching you struggling to be a mother in the midst of your illness is one of the bravest things I have seen you do. Sometimes I feel that it was the mother in you that was missing all these years. The hole that needed filling. You have been the most at peace when holding our son. A sense of stillness and peace settles over you. I can tell that you too, have tapped into that well. You look so strong and sure and more yourself than ever before.

You remember the sequence of events far better than I. The time after Finn came home was a time we tried to get used to our new normal. Chemo treatments, procedures, methatrexate, stem cell harvest. Me forced back to work. Finn eating and growing. So many hurdles. The end too far in sight to even imagine reaching for. We continued to live day to day. Right on the edge of all things. I admit that my faith faltered a bit when you were struck down by all that terrible joint pain. More pain. Ugh. The docs had no explanation this time and we relied on our own powers of healing to get you through. We had done it before and I did not want to do it again, but what choice did we have? You railed against it and fought despair and my heart broke for you ever time you tried to climb the stairs. Habit served us well through those days I think. When in doubt, do what you did the day before and hope tomorrow will be better. It was a lot of tomorrows, but you did get better. I limped through the rest of the school year somehow and you managed to stay positive somehow. I kept reminding myself to pay attention. That, yes indeed the big picture looked positive. The signs were still coming. Our family and friends stayed strong behind us. What we ever did to deserve such love, I’ll never know for sure, but the enormity of that love has taught me so much. I can now tell people with certainty that love and compassion toward others comes back to you a thousand fold when it’s needed. You don’t even have to know it or ask for it. Even the love of complete strangers has bubbled to the surface when touched by our circumstances. The love out there is boundless and will change the world. I know that now. And you got better. Your tumor was gone and your hair started growing back. A shine in you returned that I forgot was missing. Your quickness, your spark, your easy laughter. I hated the thought of transplant. You and me both, Babe.

Well, I suppose it was fitting that the end of our ordeal, (was it the end???)was as hard as the start. For you it was complete mental, physical and spiritual torture. For me it was an endurance test. You thought you might go crazy. You wanted to die. Medically you were doing great. I no longer worried about cancer. I knew you would walk out of there if only we could get there. Despite my expertise at Heather care, I knew you were facing all of your worst nightmares and they were not my battles to fight. For the first time I felt like the coach in the corner of the ring rather than your teammate. It took me some time to understand the magnitude of your fear. At the end, I thought, There. You did it. It was quick and dirty, but now it’s done. Let’s get home so we can start healing. My own insanity took over again and I pushed you a little too hard in my eagerness to be done with the whole mess. Where did I ever learn that recovery would be simple? Wishful, selfish thinking, I guess. Now we are home and healing. Making things new. Life is good if still a touch inconvenient at times. We have a beautiful home, a decent income, a lovely, growing, little boy and so, so much more. Look back Baby. See how far we have come. I am so proud of you. I would kneel at your feet and bow my head if you would let me. I have tasted the Divine and see it every time I look into your eyes. Eyes that will look back at mine for a long, long time.

Where do we go from here? Once you have been pushed to the edge and had a look, there is no going back. The other day on Oprah she said something like, “As a girl I used to dream about one day having a home where I could look out the kitchen window and see 4 or 5 trees in the back yard. I now look out my kitchen window and see two thousand trees. That just goes to show that God can dream bigger things for you than you could dream for yourself.” I never could have imagined where this journey we have been on has brought us. Our journey is not over, but I hope that from now on we can be among the few that know how to take our eyeballs out of our head and have a real look around. The world around us is boiling. Changing faster and faster everyday. I imagine our evolution like a great big black thunder cloud rolling in off the water. It is a cloud of our own making but completely out of control. It is what happens to our lives when we don’t pay attention. We, the human race are not paying attention and things are spinning out of control. The Earth has a cancer and it is pushing us all to the edge for a better view. All of the turmoil and hate and disease and insanity are all symptoms of the same thing. Mother Nature has grown old and it is time we remembered our own divinity and gave her and ourselves a break.

What do I see that gives me hope? It is so obvious once you look from a clearer place. All of the pain and suffering is necessary still, for we have not learned to see. It is pushing us to the edge. There is so much bad in the world it is hard to find the good. I say look to what is right in front of us. Our lust for talk shows, reality tv, and extreme makeovers is proof that we are searching for understanding. We want to know ourselves better and make the space around us more beautiful. Despite appearances, we do want more for the world. The desire and the tools are already in place. Our own experience proves how powerful technology is at unifying people into a force that can change the world. I also know how deeply people can give and how much love there is floating around ready to be harnessed. How many friends do we have that don’t really work? Our summertime selves included. Aren’t they just waiting for something more. Imagine the potential for creativity, healing and love just in our circle of friends. We have felt its magnitude. You have touched lives around the world and know what is true for our friends here is true for them too. The trick is for people to begin to align themselves with their true purpose. To awaken to what they truly want. Don’t you think it is time we consciously stepped into the role we have been unconsciously playing our whole lives? To be creator, teacher, and warrior of the light? I guess we have already done that. Now that I know, I can’t help it. What do you think our T-shirt should say?

Eternal love you You and Gratitude for all that is Glorious,

Dick

Lessons we think we’ve learned, turns out, we haven’t, yet. Last week was tough. I had been having some numbness in my big toe, new numbness, and it struck a note of concern with the docs. They ordered some scans, which were about due anyway—it had been 3 months. Their concern, regardless of how mild and precautionary, sent us into a bit of a tailspin here in Bath. We tried not to worry, tried not to stress, but we worried and stressed. I stressed so much my shoulders turned solid with knots and my jaw got tight. The tension in my face and neck caused me to be dizzy. In the spirit of full disclosure, I reported the headaches and dizziness, which alerted the docs more—they ordered a brain scan on top of the other scans. They informed me that the potential for a spinal tap loomed. AHHHHHHHHHHHHH!!!!!!!!

Dick and I went down to Boston last Monday night and I was poked, prodded, stuck, and scanned from 5:45 am to 6:00 pm Tuesday. Long story short, everything looks clean. Collective Phew and giant sigh of relief all around. The only hitch was a decrease in my lung function, resulting in another increase in the dreaded prednisone. As Doctor Joyce concluded, this pnumenitis is something that is and will be tedious to treat.

But here is where the new lesson lies for us. How do we live with this bastard in our lives? I liken it to having an alcoholic in the family— the threat of this illness is now part of our family. It wreaks havoc, but we don’t get to choose. So how do we live with this, own it, acknowledge and not deny it, but not let it control us? Not let it ruin a perfectly lovely autumn week? We thought we had that down. Turns out, we didn’t. So we continue to work. This lesson will likely rear its ugly head again and again, before scans, at anniversaries of diagnoses, perhaps even birthdays and holidays. We must learn how to live with this bully in the neighborhood and not let it steal our lunch money time after time. It’s the new normal for us.

We have had some great moments in the last few weeks. We took Finny to a Halloween party, excuse me, a Spooktacular, for his first Halloween. Dick was a Sheik, Finn was his Genie. I was a Fortune Teller, which is ironic considering I was so worried about my impending scans and couldn’t tell myself that all would be well. Nor did we ask Genie Finn to grant us any wellness wishes. Pictures on the website.

I took Finn for his first pool swim at the Bath Y. I have to get the procedure down—where to put him while I’m changing so he doesn’t crawl around on the wet floor, how to keep him warm after we get out of the pool, all the detaily things. But he had a good time and loved the water. Splash splash splash. More this week for sure. I did use the handicap sticker for that adventure.

I have a striking head of hair these days…those of you who haven’t seen me in a while will not recognize me walking around with my fuzzy lid. No pics yet—I am very particular about photographs of myself…

So this will be a short one. I didn’t write in the midst of our chaos because I was paralyzed. There was a part of me that had myself convinced I was going to hear that lymphoma was back, and that I was going to die from it, soon. It’s crazy where we can go in our minds. The truth is, I don’t know if I will die from Lymphoma or not. I don’t know if I will die young or at a ripe old age. I don’t know. I can accept the uncertainty for myself and my husband; I am less peaceful about the uncertainty for Finn. I wish he didn’t have to have the threat of this illness taking his mother hanging over his life. But learning early to live with this question mark, understanding that life comes with no guarantees for anyone, coming to terms with these big, grown-up questions as a young man will serve him well, I think. So for now, we find peace in corners where questions loom, and we work at being Comfortable with Uncertainty, as Pema Chodron puts it. As I discovered in my poem, we aren’t “getting there”, we are there. Here. This is it. Life as we know it. It’s scary wonderful and as good as it gets, and we smile and laugh and love each other through another day.

Should I park in the handicap space? Finger the red and white mirror tag that gives me permission
No, I need the exercise! I’m here for the exercise! Walk, dammit!
Up the path
Energy
Feeling good
Time to get back in shape

Remember the combination, open the locker
Move the shampoo
Shampoo?
Find the water bottle

Slam the locker door, adjust the ipod, fill up the water bottle
An old ponytail holder around the neck, it’s red
my reflection catches my eye
round face, 6am shadow on my head, round face
Adjust the baseball cap and
up the stairs to the track
“Heal Me” plays in my ears, Melissa Etheridge knows.
Time to get back in shape

….no use running from a revolution, I will surrender to this evolution…

Walking. Walk faster!
Limping. Limping? Limping. Limp faster!
Around. One two three times. Limping slower.
I am not the same as I was.
Slower, four five. Natasha Beddingfield in my ears.
The old man with the white hair passing me now.

…live your life with arms wide open, today is where your book begins, the rest is still unwritten…

tears on my cheeks
Hidden by the climbing wall, stop
lean and cry
Cry and cry and cry.
Surprise
It’s too much, isn’t it?
I am not the same as I was.

I AM NOT THE SAME AS I WAS!

Compose myself. Here comes the old man again. Limp along.
Harder than we thought.
Maybe I should have parked in the handicapped spot
Six laps around.
What if I can’t make it?
Sweat. Foot numb.

Into the weight room. Eyes front. Find my bench.
3 pound weights. Only 3? 3.
Start slow, my inner dialogue
Begin. Stare into the mirror.
There’s that lady
Does she recognize me?
Does she know?

Round face
13 pounds in four weeks. Harder! Harder! Fix it!
Dixie Chicks in my ears

…Forgive, sounds good, forget, I’m not sure I could….

That guy is looking at me, he looks away from my eyes
A gotee but he’s shaved his head
Buddy, you’re not bald, I’m bald.

I’M BALD!

I AM BALD!

…I’m not ready to make nice, I’m not ready to back down, I’m still mad as hell and I don’t have time to go round and round and round…

Sweat. Take my f’ing hat off. Bald head is hot. I’m bald and lifting weights.
Look straight ahead. Stop crying. Arms trembling. Weak.
Lower lip trembling. Strong.

Physical therapy exercises. Fix that leg. Fix it.
She said only one set of 10. Two sets of 10!
She said only one set of 10.
15, 16, 17
trembling
bite my lip
look in the mirror
round face, maybe a little less puffy?

Take the ponytail holder from the water bottle
Put it around my wrist
How many times I did that without thinking before
To hold for later ponytails
My own version of LiveStrong
I’ll wear this now

Into that empty room
Find that rubber thing
Stand on it, try to balance

…well I never seem to do it like anybody else, maybe someday, someday, I’m gonna settle down…if you ever want to find me I can still be found, taking the long way around…

taking the long way around
Long Way
Still on the rubber thing
Find my balance

FIND BALANCE

Sinead O’Connor now
To the mat

…I have a healing room inside me…the loving healers there, they feed me….it doesn’t matter what you think you….

On my back. Rest
Tears in my ears
I’m ok
I’m here

I’M HERE

I’M HERE

…I get the answers if I listen….

I’m bald and limping and I’m here. I am here.

…it doesn’t matter what you think you believe….you’re not free if you don’t know me….

Lift that leg. That leg. Take care of that leg. Love that leg.

….I joy in singing you’re my daughter…..so believe…you’re not free, if you don’t know me…

out for one more lap
nice and slow
down below
that same guy I used to see here last year
did he ever leave?
Does he know?

it’s ok
enough for today
walk to the stairs
fog out the window
foggy

Marla is here
“What a treat to see you!”
hold me
what a treat to be seen
chit chat
I am here

Strip
Strip
Limp to the shower
Come on leg, come foot
Enya in my head
A soft soothing ballad
A hot soothing shower

Suds and lather
Massage my leg, MY leg, MINE
Massage my bald head
MINE

Hot water
Tears
Streaming
Good good
God

I’m here

I love hot water

I’m here

Dress
Hood up against the cold
Limp past the handicapped spot
to the car
home
home

physical, emotional, musical arc
lucky lucky

leaves swirling
in the door
aromatic coffee
Dick’s voice
Finny squeal
“I’m here”

I’m here

I am here

Last week I caught the creeping cold that has plagued the community, in spite of our best efforts to keep me from it. The Boston team jumped into action with a 4 hour immuno globulin infusion to give my immune system a boost, and I narrowly escaped an invasive procedure to test me for the RSV virus. They wanted to stick a tube way up my nose into my sinuses but I whined so hard they finally went away. Now I am getting stronger every day. I am still on prednisone, and although I am tapering down, I still have that round prednisone face (and body) that reminds me of where I have been for the last year. I am anxious to leave this and all of the other drugs behind, and morph, finally and permanently, into the new me. The great thing about the prednisone is that I am running circles around myself getting things done. I am quilting again, working on Finn’s journal, getting ready to paint, finishing decorating Finn’s room, on and on. I have even been busy in the kitchen—Finn has taken to my cauliflower, broccoli, carrots and parsnips, even cantaloupe and mango soup. One day I even baked Dick cookies. It feels so great to move around the house so easily.

I have begun physical therapy to regain strength and feeling in my left leg. I am walking well now—my limp only comes out at the end of a long day on my feet. But I am saying “a long day on my feet”! Amazing. It’s hard to believe, but one year ago I was just beginning to be in real pain. I was seeing accupuncturists, massage therapists, orthopeds, osteos, etc., and we all just thought it was a bad case of pregnancy sciatica. It is amazing to think we carried on like that, worsening, for 7 weeks until my eventual diagnosis on November 21. It’s been a long year, and I am so grateful to be on this side of things.

We have been getting out for walks and enjoying this change of season like never before. It’s that brief but lovely time of year when, for just a few days, the air smells like both summer and fall—folks are mowing the lawn one last time, kicking the scent of fresh cut grass up to mingle with the chilly nippy scent of falling leaves. Likewise the temperature is wishy-washy—sort of cold and hot at the same time. It’s deliriously confusing to the senses. Tomorrow I’ll take Finny out to our lawn (fresh mowed) and photograph him with the giant pumpkin Nanny and Gramps brought over for him. It’s twice his size.

I know there was more I wanted to say, but now it’s late and I want to try to sleep for a few hours before the steroid zombie in me rises to make more pretty yummy things. More pictures and words later. I have all the time in the world.

Love and light,

Heather