On a brighter note...we are half way though this regimen!
Saturday, October 28, 2006
On a brighter note...we are half way though this regimen!
Friday, October 27, 2006
1. Treatment will continue on the every other week basis. The last day will be Friday, December 8th.
2. Art will spend his Thanksgiving day at the treatment center. (I know, breaks me up too.)
3. After December 8th, he will start another chemo regimen called Hyper CVAD. He will receive the “B” portion of the regimen.
4. It is a nasty regimen. The doctor thinks Art will only be able to handle two rounds.
5. Round 1 will be on December 18, the day after our 12 year anniversary.
The rest is guess work for now, but here are general dates:
On the week of January 22, his stem cells will be harvested.
On the week of Jan. 29th, he will get a dose of HIGH chemo therapy.
On Feb. 5th, he will have a stem cell infusion.
On Feb. 5th, Art and I will move into an apartment near the hospital for up to two weeks becuase the doctor wants us close to "help." His white cell count will be close to, if not, at zero. If I stay with him, neither of us will be able to see the kids.
In March, Art will have radiation on his testis.
In April, God, Allah, and Buddha willing, he will be cancer free.
This road looks very long and uncertain from this couch. What I know from this place is: We are half way through the first chemo regimen and Art is alive. I don’t know how many more tooth fairies or kids at school will be forgotten. I don’t know how we will make it through Thanksgiving weekend. I can’t even imagine what Christmas will look like. For the moment, I am choosing not to look at what will be, but what is. What I do know is that Art can still hold me and I him. That is truly all that matters.
Thursday, October 26, 2006
Thanks to the generosity of the Talbert Family Foundation, we have been able to set up a fund. 100% of tax-deductible donation will go to us.
This has been an agonizing decision. The mean, shaming voices in our heads have said "Shame on you for not saving thousands and thousands of dollars for this "rainy" day." We do not make the request for funds lightly. Thankfully, we also have courageous and optimistic voices that are louder. They say, "You are not alone. If you ask, it will come." We are listening to these nicer voices and trusting it will work the way it needs to.
To say this experience has been humbling is like saying it’s cold in Alaska. “Thank you” does not cover the breadth of our appreciation for the words of strength, the prayers, the notes, the emails, and the gifts that give us courage every day to put one foot in front of the other. If you do nothing else, please keep them coming.
Click here to donate.
Wednesday, October 25, 2006
Present day Art. Taken today, earlier this evening.
The chemo treatment is rougher on him this time. Somewhere in between the first treatment and the second one, lies this experience.
We have stopped setting ourselves up by guessing how each treatment will be. Nothing is permenant but impermance.
Sunday, October 22, 2006
We will change places this week as chemo progresses, although I don’t know that my thread ratio will go up. He will nap, I will discipline. He will focus in on himself, I will let him go. He will feel hopeless and I will remind him of the beauty around us.
My threads come unwound and with his skilled hands he winds them back together. His threads unravel and with equal dexterity I rewind them. Thus, we manage to stay bound together.
Wednesday, October 18, 2006
He sat next to me on the couch, perched on the edge. He gave one of those, I’m-so-tired, don’t-feel-like-doing-this, makes-you-want-to-comfort sighs. I instinctively put my hand on his back and started rubbing. “Hey” I said cheerfully, “you're half way through…” No, I thought, he’s not half way through. “Don’t worry,” I began again, in my best ra, ra voice, “you’ll get better soo,” and stopped myself. In the day to day of this cancer life, 4 ½ months is not soon. I made on last ditch effort. “Honey,” I started tentatively, “……..” nothing came out. This disease leaves even me searching for words sometimes.
Sunday, October 15, 2006
We are not sure why he's doing well. Is the extra fluids I asked the nurses to give him this round or is it the superfood shake we are drink daily? Is it that he spiritually better connected and mentally "knows" what to expect? Or is it just experience getting us through this? We find ourselves becoming as superstitious as baseball players. We will repeat what we have done this week in the weeks to follow, putting our hopes in avoiding anymore nastiness of this disease's cure.
As I was writing this, I asked him how to spell superstitious. Mr. "hard English teacher" couldn't tell me. I watched his face as he tried to remember. He looked at me, and smiled broadly which then turned into a laugh. As he left the room shaking his head, he was laughing. Maybe that's why it wasn't so bad. He's letting go, holding tight to the things that matter.
As we talk, I go from an upright, back straight position to an inward, crumbled rag doll, sinking further into our oversized green chair, unable to meet Art’s gaze. Every demand I make deflates me as pieces of self disappear. Art, on the couch, is looking emotionally sicker and sicker as the conversation continues. I sob. I’m confused, not sure of what it is I want, unsure of the purpose of our conversation. I look into my lap at my ringing hands and realize I miss him. I miss him so fucking much. I am thinking that when Art begins to cry. “I miss you,” he says and holds out his hand to me. We come together, crying on the couch, both of us relieved.
Cancer corrodes the pieces of he and I that fit together. I forget that lesson every time we go into chemo. In cancer, I am busy dealing with our lives, he is busy getting through the next moment. We talk to each other every day, but until last night, we hadn’t touched each other in over a week. There were the usual hello and good bye kisses, but our morning ritual had disappeared into the chemo fog. The moments that make a marriage work, like appreciating the others wise-ass comment made towards the kids, are absent.
This cycle of connect, disconnect, reconnect is not new to our marriage. Our ability to reconnect is the reason we are still together. But this disease amplifies all of it; the shame, the anger, the hurt. As it does the sweetness of Art’s breath, the sound of his voice as my head rests on his chest, the feel of his hand lying lazily on my hip.
Thursday, October 12, 2006
The side effects of the drugs are many, irritability and loss of balance being only two of them. From nasea, which they give him more drugs from, to fatigue, it's pretty wild to read the side effects card that Cedars gave us, and check of those present in my husband.
Hiccuping is by far the most entertaining. I'm talking about bed vibrating, body rattling hiccups. When he has them he tries to get rid of them without the help of yet another drug. He puffs out his chest like a proud bird while he is simultaneously holding his breath. I am usually talking about something and not looking at him. I get annoyed when he won't respond, turn to him and there he is. Chin back to his neck trying to look "big." Our laughter foils at least one attempt. The next logical step would be for him to move his chin and neck forward, place his fist, elbows bent, on his hips and do the bird walk.
It's good to laugh together.
The side effects of the drugs are many, irritability being only one of them. Hiccuping is another notable one. I'm talking about violent, neither of us sleep, hiccuping. He is currently on Thorazine (?)
Wednesday, October 11, 2006
I felt nothing. No emotion. Not saddness, no woe-as-me-ness. Nothing. This is just another phase of this disease. It has taken awhile to effect this aspect of our lives. We will muddle our way through this, just like we have all the other parts. I'm sure I'll cry about both these things later.
Art has gotten mean. Not mean mean, but short tempered, low fuse, misunderstanding mean. This morning, I felt like I needed to protect the kids emotionally from him. It is not a feeling I am acquainted with. There are two drugs, Methotrextate and Ara C, that get injected into his spine and thus go straight to his brain. Listed side effects for Ara C are confusion, agitation or hallucinations. (At least he’s not hallucinating!) Add to this Art's general irritation at not being able to be “him,” and it’s making for some interesting family dynamics. One whimper from Ezra sets Art off. He forgets that Langston is nine and that we have to "refocus" him at least three times to insure his dirty clothes end up in the hamper. The kids feel the change and are shifting their energy to me even when Art is “well.” I feel the pressure to protect them. And it’s all changing how we relate to him. I know it’s the drugs and the disease, but try telling that to a 4 ½ year old, or to a 9 ½ year old. Try telling that to yourself after you’ve been yelled at by someone who has rarely yells. It’s pretty fuckin’ hard to separate the man from the drug. Pretty fuckin’ hard.
Tuesday, October 10, 2006
I feel stretched. Thinned out, bendy, double backed. The weight of this disease and what it is doing, has done to Art, to us, deforming our vision of ourselves. It crushes from all sides, below me, to my sides and diagonally down on me. Moving feels optional.
I know this is where I need to be. I know that I am “processing,” moving through, working out my emotions. But it doesn’t make sitting here, staring at the blank T.V., any easier. I think I can find a number, call a friend and ask them to do it for me. Yes, I know I can.
Friday, October 06, 2006
Fast forward to today. I am preparing for next week when we will be by ourselves as a family for the first time since days after Art was diagnosed. I am feeling organized, a bit freaked by the proposition but well supported by many. I know that I am not operating with a full deck of cards. I know that emotional stress takes its tool on memory, and ability to adjust. So I am double checking my plans for next week with friends, just to make sure I’m not forgetting things.
No one told me not to forget Pallas today at school. No one told me to remember to check with Langston’s ride from swimming to make sure they would be there to get him home. Now…I emotionally get why we need everyone's help. No guilt involved though. I know I am not “all there.” I also know, and am very grateful, that we are surrounded by people who do have full decks and will fill in when I can’t remember things. Both kids arrived home in the hands of friends. So will next week go perfectly? Probably not. But if I walk away with no other lesson from this experience, I will walk away knowing that we are loved, and supported and that things have to go through many, many sets of hands before we hit the ground. Thank God for you all. Thank God.
Wednesday, October 04, 2006
He has told me he will not die before. “I will not leave you,” is what he said. But many times it sounded as if I was his little lady and he was shielding me from a truth I couldn’t handle. I grasped at it anyway, believing it to make it through another minute. But yesterday was different. The kids weren’t around. The statement didn’t come at night or in the panic rush between dinner and bedtime, or after tears. It wasn’t on one of our long, quiet and emotionally frightening drives back from the treatment center. We had already walked through the awkward re-acquaintance period -- how he’s feeling, the nuts and bolts of our days -- and were enjoying, our time alone, together. I asked him then, out of curiosity, not fear, how he knew he would survive this.
People think that a “good” couple knows everything about each other. A soul mated pair anticipates when and what the other will need. This disease punches more wholes in that idea than buck shot. I have watched him close in on himself and not known what to do. I have held him while he has cried and felt the powerless in trying to stop the tears. I don’t know a thing about what he is going through, not a thing. But I do know something that helps me continue this journey with him. Me. I am enough for him. I am enough and really, I guess that’s all that counts. It's all beautiful righ now.
Monday, October 02, 2006
For the second morning in a row, upon waking, I find myself enveloped in Art’s arms. As I settle in, he smiles and in a deep, warm, Art voice he speaks the words that I don’t realize I have missed until they are said. “Good morning, sweetheart,” he smiles. Then he pulls my in closer and gently kisses my forehead or pulls my hand to his mouth and kisses it, as if it were the most delicate thing his lips have ever touched. For me, it’s the moment in my day when the world truly is outside, and we are in this space that is only ours. Even with the kids literally in between us, he has managed over the years to create, for just a moment, this circle where only he and I matter. It’s his way anchoring our day in us. For me, it’s the moment when I know I really matter to someone else. For both of us, it’s been missing from our lives for too many weeks. This tiny little morning ritual has been in existence for over 12 years, from the first time we spent the night together.
The last two days have, again, given me a glimpse of the man I am fighting for. And it makes me smile really wide! But like a spoon, for him, it has made the rest of the day difficult. What I see is progress, the messiness of chemo slowly leaving him. What he sees is the potential of the day. He starts out with ideas and thoughts, but his body cannot supply the energy or strength for the plans. I feel hope in his tenderness, he feels frustration that he cannot maintain that desire to take care of me. I feel elation, he feels anger.
As I sit here, next to him, we are the concave and convex emotional surfaces of a spoon. Some one commented on this blog to look at the good that we have. The good outside of us is easy to see in the support, the cards, the phone calls and the emails that keep coming in. It is harder to see within ourselves. We have been reduced to being happy that Art can walk down to the end of the block and back. It’s a challenge to rejoice in that kind of stuff. But funny, how one day I cannot and the next day I can. Art held me this morning. And maybe tomorrow he will be able to find peace and beauty in that simple action.
OK, back for a moment to the pity party. Art is my muse and my editor. I often ask him to read everything I write before I post. He offers clarity and astute feedback always. Tonight when I read this too him he was just too unfocused to help. I want to go back, right now to this morning. That way I won’t feel as lonely as I do at this moment.