An update…finally and Happy New! :)

Neil & I at the Bone Marrow Clinic on New Years Day

Greetings and a very belated Happy New Year! Seems a little silly even saying that as we are almost into February already…hard to believe and yet it seems to sneak up on me every year. I hope you all are doing wonderfully well in this new year, a year of new beginnings, bright possibilities and yet large scale shifts in thinking, being and living for not only the Phillips’ camp, but for all of us in light of the current pulse and trends of our nation and world. We certainly live in interesting times!

Speaking of which, I was pleased as I listened to the recent inaugural address to hear a large scale message to everyone that resonates with my own core beliefs of personal responsibility and accountability and seemed to mirror many of the insights I have gained and lessons I have learned over the last 8+ months of this journey;

• That bringing dark things into the light of day to face, reveal and shrivel requires a need to be willing to endure and even choose sometimes hard, painful and uncomfortable choices.

• To sit with situations we are challenged by, uncomfortable with and resistant to in order to untangle ourselves from their grasp.

• To sometimes knowingly and willingly take the long, harder road because we know it is the right and true path. And yet always looking for, even searching for, the light.

• Knowing that there is beauty among the muck and mire of the path we are called to walk, freedom in it’s lessons and a sweet redemption that seems sealed, even guaranteed, when that first choice is made to step out and trust. As if the decision itself is more important than where the path ultimately leads; that the journey and it’s tests along the way are as important as any outcome. A still sweet knowing that echoes quietly along the way as a gentle, subtle reminder to will you on and to quiet the fear and innate desire to look back and question your original choice when struggles come.

Nice light way to kick things off, huh? Well, it might help to give you all some perspective by filling you in on what has happened since Neil’s last posting. I have to be perfectly honest here and tell you that the last high dose chemo was a bit rough. With only 5 weeks in between the two transplants, it was a 1-2 punch and it was meant to be. The doctors wanted to hit it hard and hit it hard again quickly with the high dose chemo to knock it out for good. So, as I mentioned in my last posting, we moved forward as soon as the doctors felt it was medically safe to do so. And, yes, it was physically harder up front, but it was the combination of the physical and emotional endurance that was hardest for me. You see, there are odd things about this whole experience that people don’t understand. For instance, when you walk into the hospital for the high dose chemo you begin to realize, “No one is making me do this.” “No one is forcing me.” “Yes, it’s what they recommend”, “the best they know of”, but there are “no guarantees”. So you start to comprehend that you are choosing to be there, to have this done to you in order to save your life. I have never personally liked the words “fighting cancer” because it is my opinion that what you are fighting for is your life…for the love and beauty, laughter and smiles, quiet moments and deep, easy breaths, for what is to come. That is what I fight for.

So I finished my four days of the second high dose chemo, they watched me for two days, did the second transplant and discharged me home. I am pleased to say that after spending my birthday, Thanksgiving and Christmas in the hospital, Neil and I were able to ring in 2009 at home. This time I made it 7 days before I had to go back into the hospital again. If you remember from the first high dose, I was told that it is a sure bet I would be back in hospital about 3-5 days after being discharged when my counts had dropped for a fever, mouth sores or nausea. I made it 3 days after the first high dose before I was readmitted so I was thrilled with each additional day this time knowing that everyday was one more night in my own home with Neil. But on the night of day 7 I started to spike a fever and had to call in. And off we went…back to the hospital. This is where it got really tough for me. As I walked into the unit that night I was in a lot of pain from some of the side effects of the chemo and feeling pretty crappy because of the fever but what was most broken at that point was not my physical body but my spirit. I had already spent well over a month in total from my prior hospital admissions and somehow that combined with the physical pain seem to compound it and tip the scale…I felt myself sliding. As I stood outside the doors of the unit, it was as if I sensed what was coming. I willed myself to go in knowing that I needed to but also knowing that I wouldn’t be able to leave until they let me go days later when my counts recovered. As they got me checked in and settled, things seemed to quite down and Neil left for the night. Within an hour I was in full rigors (the fancy body shaking thing again from the fever) and, as I tried to dig deep, for the first time I came up with nothing. That night, as they hooked me up to multiple bags of antibiotics and tried to get me comfortable, I just broke. In the dark of the hospital room, scared and with tears streaming down my face, I cried out in a whisper for God to please help me.

Neil took this that night and when I asked him why he said "I want you to remember this so you'll never forget how far you've come when this is all over."

For the next few days Neil and my mom didn’t leave my side. There were quiet moments when my mom laid in bed with me, wrapped her arms around me, evoking memories of when I was a small child so long ago. And other moments when Neil just held me and let me cry, telling me how much he loved me and how beautiful I was. It was as if I had collapsed just shy of the finish line and each of them, without a word, just picked me up and carried me the rest of the way. Somehow with all of my years of running and training my mantra had become pushing through plateaus and exceeding limits of what I thought was possible. Intellectually I knew there was a theoretical breaking point for everyone, but I never thought I would ever reach mine, let alone have to face it. And yet in breaking wide open, there was freedom and in the tears a cleansing. It was a cleansing I didn’t know I needed. I have embraced all of this as it has come, making a conscious effort not to “stuff” any of it or carry it along and I so embraced this uncharted territory too. It was as if it was all saved up for the end, the final lap, the final hurdle. A final surrender and breaking off of the old that had to happen to allow in the new.

I share the details of this with you, not for your sympathy, not at all, but because I think we all go through times at one point or another that threaten to bring us to our knees, to our breaking point. Actually I hesitated to share this at all, not out of concern of looking weak but because of the “story” it generates. It’s not about “Poor Alyssa”, not at all. I don’t feel sorry for myself, quite the opposite. I am so grateful, grateful to be broken open and for the lessons I have learned and continue to learn about myself. Nothing else could have done this. For you it may be a lost job or house, a move or divorce, losing someone you love by circumstance, choice or death. It will be something for each of us, sometimes it’s several things. The death of my younger sister almost 12 years ago was one breaking and this has been another. My hope in sharing this is that it could help even one person to know that when they find themselves at the bottom of what seems to be a deep, dark pit that they can choose to embrace it, look around, learn the lessons and walk through it. It’s the only way back up. We can spend so much energy and time trying to run around or away from something, when the only way past it is through it. When we stop running and just look at it, face it, the suffering stops and we can untangle ourself from it. Just like in the Wizard of Oz, when you pull back the curtain, it’s not as scary as you thought at all. It was just trying to get your attention. And sometimes we need help to gather ourselves, to rest for a moment or to find our way back. It is my belief and my experience that God puts people, things, situations and opportunities into our lives to steady us, pick us up, fan our flame, fix us enough to start moving forward again and even create a way when it looks like there is none.

After another five days in the hospital my counts recovered and I began to feel better. I had finally crossed the finish line. When I left the hospital for the last time, as my sister Monique so wisely suggested, I left it all there. I left all the chemo, all the pain, all the sadness, all the loneliness of these last 8+ months and even the cancer itself. And I walked out into my new life. Darkness was transformed into light once again.

And here I sit a month later happy to have all that behind me, at home with Neil and looking forward to our plans for the coming months and year. We have a lot of making up to do! Ironically, I have bounced back faster from this last high dose than I did from the first and have quickly progressed to “blood work only” visits at the clinic and I will get the catheter out of my chest on Monday…VERY exciting! My biggest challenge right now is which project to tackle next and how to squeeze in meditations, workouts, catching up at home, chores, computer stuff, etc. while trying to keep my Type A personality in check. That’s why I haven’t written this posting sooner…I’ve been busy! :) But I have another two months of “house arrest” to figure it all out. At the moment I have the immune system of a one month old baby and they say it will take a full year before it is “normal”. The doctors will do a full re-staging to confirm the “absence of disease” at 3 months, 6 months, 9 months, 12 months and 2 years.

Enough with the medical stuff! I am so glad that all of you, through Neil’s last posting, have gotten to see for yourselves what an amazing man I have the privilege of being married to. I often tease him that “I’m just lucky to be around here,” to which he always quickly agrees with a big smile. We are both “lucky”, truly blessed. He has been a rock, my rock, during this and has steadied me more than once during some of the “storms” we have encountered and he shielded me when he could. I am also glad that you got to see a glimpse of all of this from his perspective. I read something from a prior cancer patient that she felt it is often just as hard on the caregivers as it is the patient. I tend to agree with this, because while the caregiver doesn’t have to go through the actual treatment, they have to watch as someone they love goes through unpleasant procedures and grueling treatments, all the while being powerless to make it better, to make it all just go away. For the last eight months Neil has continued to run his business, even grow it, while spending countless hours with me at the hospital and at home, sacrificing big and small things to help smooth my course wherever he could. As I told him, it will be my honor to spend the rest of my life showing him my gratitude and trying to somehow give back to him what he has so selflessly given to me.

Me and Mom hanging out in the Bone Marrow Clinic on one of our many 6-8hr daily visits

It has taken a team of very dedicated people to pull this off and each signed on for the long haul. My mom spent everyday with me while I was in the hospital continues to run countless errands and grocery runs, as have I am unable to go out in public and still have another two months to go. Also, Anne, Neil’s mother and my mom have rotated shifts to the clinic for my daily 6-8 hour visits, all the while asking if there was anything else they could do to help. The loving support of my Dad who spent evenings with me in the hospital and who covered for me by eating many a hospital dinner when I refused. And my sister, Monique, has made multiple trips from Washington, D.C. to help pick out wigs, celebrate Christmas and have talks only sisters can have. And then there’s all of you who have sent countless cards, emails, well wishes, prayers and meals. The volume is staggering, the support humbling. I am in awe of the love, kindness and generosity we have been shown and can only hope that you all will know our sincere and deep gratitude. While we still have a ways to go, we have come so very far and we will savor that for now. We’ll keep you posted…

With love,

Alyssa

“Faith is being sure of what we hope for and certain of what we do not see.” Hebrews 11:1

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