Transplant

I know that he’s just gone deeply inside himself to find the strength needed to get through this. I also know he will become more and more silent as he gets sicker and sicker over the next long days.

transplant

March 26, 2018

Michael’s second transplant has started. There are six bags of stem cells today, and six again tomorrow. But today I am realizing how dangerous this really is. He’s been pre-medicated with Benadryl because of the strong allergic reactions that bodies have to the medium in which the stem cells are preserved.

“Now, you know you need to tell me if you have any heart pain or chest tightness,” the nurse says again. Michael nods but now both the nurse and I are on high alert, watching carefully. Meanwhile Michael has moved into closed-eyed silence and only monosyllabic responses. I should be used to this by now, but I’m not. When he is sick I always feel like I’m being shut out. But I know that he’s just gone deeply inside himself to find the strength needed to get through this. I also know he will become more and more silent as he gets sicker and sicker over the next long days.

Then yesterday we were told that there is flu on this ward. Apparently, there have been deaths from the flu in this hospital but we don’t know if those happened on this ward or not. Regardless, I’m even more cautious now though there’s not much to do but wash my hands a dozen times a day. Mostly, I sit and watch, and today I bring my laptop.

It’s boring really. Tremendously boring and also horrifying. Two days ago he was given a poison that will almost kill him in the next two weeks, and now he’s being given the stem cells that might prolong his life. But even the stem cells have risks and the progress of their input is watched closely, the nurse standing by for the next two hours, carefully monitoring every sign of life.

Michael’s throat has started itching and though that doesn’t sound like much, the nurse immediately backs off on the rate of the stem cell drip. It’s a sign of an allergic response and they’re not taking any chances.

This is good! During the last transplant 19 months ago, I am at my youngest son’s wedding. It is a tremendously hard decision to make but the nurses assure me that Michael is in good hands and I choose to see my son marry his beautiful wife. I just can’t miss this milestone event and Michael strongly encourages me to go. He knows exactly how important it is to me to be there.

In the middle of the rehearsal dinner I get a text from Michael saying that they just placed him on oxygen. I am terrified.

I go outside and stand on a cliff above the California ocean and cry unrestrainedly. “I should be there, I should be there,” is the refrain in my mind. But I’m not. I’m 2000 miles away and I don’t know what’s going on. I get another text that he’s gotten so much fluid with the transplant that it’s become hard for him to breathe. I go back into the dinner and my other son’s wife explains it to me. She’s a nurse and she can see how upset I am. “It’s not a big deal,” she says, “people go on oxygen all the time. The fluid pressed against his lungs and made it hard for him to breathe. They’re doing the right thing. He’ll be ok.”

I am much calmer but I’m also anxious to be back home, to see my husband with my own eyes, to know he is truly ok. I’m only gone for 3 days but it feels like a lifetime. What a comedy of timing! My son’s wedding, my husband’s transplant. Could it get much more dramatic? And then I realize that of course it could. Michael could die from this.

Now as the stem cells continue to drip into his arm, I tell the nurse about his previous transplant reaction, about the use of fluid that compromised his oxygen intake. The nurse pays careful attention to what I’m saying, checks his oxygen saturation, and it seems this will not happen again.

After a few hours, it’s done. There haven’t been any really bad reactions and now Michael is sleeping. The stem cells are in and making their way to the bone marrow, to the possibility of building new life within his sick one.

But I also know what’s coming. In about a week, Michael will literally be standing at death’s door once again. His white blood cell count will go to zero. And then, if things go well, the stem cells become engrafted and take over for the stem cells that are no longer healthy. Once this happens he gradually comes back from his visit to the underworld, hopefully coming back stronger than the last time.

Transplant day is counted as day zero here on the ward. It is celebrated as a birthday and helium balloons are given out in an effort to cheer up a procedure that is anything but cheery. Really, it’s not a birth day, but it is the possibility for a rebirth. And no matter which way it goes, it’s the end of the line for us. It marks a rebirth into a new life, or into the next life. And either way, both of us are looking forward to going home.

Anger and Bliss

The transformation of each of us takes place at the center, where the suffering is the most intense.

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01/21/2018

Last week we received Michael’s new numbers from the hospital, the numbers that speak to us of progress or lack of progress with his disease. The numbers still aren’t good.

As I take in this new information the usual feelings overwhelm me. I seem to have to work through the same cacophony every time: shock, frustration, resignation, sorrow, and finally, acceptance. But this week is different. This week I feel anger sneaking its snarly little head into the mix, stuck in the crevice between resignation and sorrow. And though anger has been here before, this is an onslaught and it stays with me for several days.

Along with Michael’s quality of life, my life quality has also diminished considerably and I begin to justify my angry stance. “I’m sick of this life we have. I feel like a prisoner. How much longer is this going to go on? What’s he hanging on to? Why can’t he let go? Why can’t he die?” ‘Prisoner’ and ‘die’ are the words that stand out to me and I hear how angry and resentful I am. These are true feelings, but these are not the beautiful feelings. This is how ugly it can get inside a human mind.

After a few days I find my better self and I speak gently with Michael about my anger. In turn, he shares his own version of the darkness, “It’s not fair that I got this illness! It’s taking everything from me. My life has been destroyed. I can’t whistle, I can’t walk the way I used to, my ability to pursue my life has been taken away. My hands are clumsy and eating is a problem. Why don’t I just die? It would be better for everyone if I just died.”

As he speaks I realize that these stories of victimization are understandable and normal. But they are not pretty, and certainly not the way either one of us wants to feel. It is the mind’s way of coping with events that are just too hard and too brutal to grasp and our minds make up all kinds of stories to explain the pain we are in. It takes real effort to witness this mind game and to realize that it doesn’t need to be believed. We are not our thoughts!

To work through the anger and the stories, I have to muster the courage and humility to speak it to Michael. Thankfully, he can hear me. We are good partners, and I am grateful for the gentle ways in which we are treating each other. I’m not saying we haven’t always been kind and respectful, because we have. But it is deeper now because there’s more at stake. We both know this and we both work at this.

As soon as I hear the story I’m telling myself, and once I say it out loud, I realize again that I’m not a victim here. I’m exactly where I should be, and exactly where I’m supposed to be. For what good does it do to believe otherwise?

For instance, if I’m not exactly where I’m supposed to be, then where am I? Where I’m not supposed to be? How can that even be possible? If I’m here, then I’m supposed to be here. It’s just a rule of reality.

Of course that doesn’t mean that I don’t strive toward the Good, strive toward growth and something better, for that striving is infinite and ongoing. But to recognize the Good, it feels to me that first we need to recognize exactly where we are so that we can know in which direction to point ourselves.

At a spiritual level, to find the Good, the only way I can make sense of it is to recognize that every element of reality, in any situation, is here for my potential growth. And I mean every bit of it – including the mean thoughts and feelings I have about my sick husband. If I don’t admit to these feelings, they grow and fester in the dark.

Every moment of this experience is here to show us to ourselves — all the pettiness and compassion and sorrow and love. And maybe the really hard stuff is the most important because not only are the consequences so dire, but the potential for growth is so high! For this is the suffering that most captures our attention.

The great psychologist, Jordan Peterson, talks about the symbolism of the Cross and the Labyrinth. In both of these symbols we travel from the outside toward the center. Peterson says that to understand these symbols, we have to realize that the transformation of each of us takes place at the center, where the suffering is the most intense. In other words, the greater the suffering, the greater the potential for transformation. I see that through this suffering comes the possibility to awaken wisdom and a kind of grace.

The truly remarkable thing to me is that neither one of us has actually “lost it.” Neither one of us has freaked out to the point of losing our integrity or our center. We are not filled with suffering. We recognize it, but it doesn’t own us, and it feels like it’s all just a matter of perspective. We can talk about our anger, a potentially dangerous topic, and we can do it with calm and decency and respect.

The further into the chaos and pain of illness we dive, and the more suffering we endure, the more the potential for transformation shows itself. I see that my anger is an expression of my fear and pain and I can recognize it for what it is — potential for huge growth!

Now, able to be at my best, I forgive myself for my anger. As I do, I see this time as allowing me more clarity than I have ever had, and I literally feel awash in love for myself and others. Similarly, a few nights ago, Michael spent the entire evening in bliss — the entire evening! Both of these experiences feel like a complete miracle to me.

It really is only a matter of perspective, and this level of perspective can be taken by any of us. When we find ourselves suffering, we can dare to face into it, we can dare to know that we are exactly where we are supposed to be, we can dare to be truthful and open. It simply involves taking responsibility for where we find ourselves and for telling the truth. It really is as clear as this.

At this point, Michael knows how I feel, and I know how Michael feels. We know each other’s myriad thoughts and feelings around death and dying. I sense that now anger may be more a part of the mix than it used to be. But even if it is, now I know its face and I’ve heard its speech. It will catch my attention sooner if it comes again. And if it comes,  I know everything is on the table between us, and I can continue to speak what needs to be spoken. What a relief! I have never had the opportunity to be this honest and free before, and I think Michael feels the same.

So weirdly, though grief is in the background of every day, this isn’t just some difficult time in our lives. It is also a time when waves of joy dance within us, when things are more important, when truth is paramount, and when consciousness allows us to rise above these horrors and see them for the human comedy that they truly are.  It is a time for loving each other in a deeper, different way.

For any of us, learning how to be with our suffering is one of the greatest gifts of any crisis. In it, there is real potential for deep recognition of the patterns that have bound us. Today I see that Michael and I are receiving a tremendous opportunity. I realize we are moving more consciously into our suffering and into our hearts. I feel us standing together, witnessing in awe, the huge blessings and mysteries that unfold around death.