Saturday, October 29, 2011

Blessings when you see them

What a crazy few weeks! Thank you for your help getting through all this, especially to those of you who were able to help in person as well. We were carried along by your nourishing food and company and your help with the kids, as well as everyone who covered for my husband at work. Even for those of you who say that it isn't a big deal - without your help, there would have been a gap. Thank you.

So much has happened to make these past couple of weeks crazy. In summary regarding my health, after spending some time in the hospital, I am doing much better and will take an extra week off before my next chemo session. 

Given this shift in my chemo schedule, we can now use meals on weeks where we didn't think we would need them. If you are so inclined, please let me know if you want to sign up.

In addition to my own health issues, we had innumerable crazy health experiences involving those we love, throwing us off our center in a big way. Though it impacts us deeply, the specifics are their news to share.

As for us, here are some key events:

After being ill at home for many days in a row, I rallied to meet with Eve Bridburg. Eve founded and is the current Executive Director of Grub Street, a literary arts center for writers of all levels. (If you are a writer, you need to check this place out.) I am energized just breathing the same air as Eve. She is creative, smart, funny and direct. She can cut through any degree of crap to get to the essence of whatever is going on or to highlight the absurdity in a situation. Leading a workshop, she provides important feedback to improve your work while keeping your ego intact. She laughs easily and at the right moment to diffuse tension, something I would love to be able to do. Obviously, I admire her and adore being around her. 

A confluence of circumstances brought her to my home last week (lucky me!) and, as we conversed, we discovered that we both worked for CSC Index at the same time! I shouldn't be so surprised; Index attracted smart, creative and direct people. But during that time, I was a consultant totally focused on my work, and she was an admin working her way through grad school. I don't remember meeting her, and, knowing myself from that time, I'm sure that I didn't spend a single braincell on someone who didn't directly impact my client or my team.

My loss! How silly that I didn't stop to appreciate all that wonderfulness and fun right in front of me. I feel like I could have been friends with her much earlier and enjoyed this friendship for so many more years.

After meeting with Eve, though, things went downhill fast in alot of ways. To spare you the gory details of everything, I'll focus on my time at MGH last week.

I went in for chemo on Monday, October 17, same schedule as always. My stomach felt raw and ragged, and the nurse practitioner questioned whether I should move ahead. But I had two more rounds to go before my PET CT, and I wanted to plow through them. 

MISTAKE. My stomach started out bad and got worse. After a couple of days, when I couldn't even keep down sips of water, I agreed to go to the ER. Thankfully, the oncology team paved the way and I got in without a wait.

Loads of things happened there, many of which are fuzzy due to all the pain I was in. For example, one of the nurses tried to force a huge needle into my port-a-cath, telling me that I had the wrong port. No - she was using the wrong needle. I can't blame her for insisting she was right against all evidence to the contrary - I myself have done that many times. One time, my husband and I flew on USAirways to Washington National Airport. However, I thought we were going to Dulles. When the flight attendants announced our landing at Washington National, I laughed and said to my husband, "Good joke!" without any explanation. When we got into the terminal, I commented with glee, over and over, how it looked just like Washington National. I must have sounded like a crazy person, but I knew that they had been remodeling the Dulles Airport and assumed that the final result made it look EXACTLY like Washington National. We were out of the airport before my mental image jolted in sync with my physical reality. But at least I wasn't trying to puncture someone's lifeline.

Larger than any of this, though, was the NG tube. NG is short for nasogastric tube, naso meaning something to do with nasal passages and gastric meaning the gastric system. It goes into your nose, down your throat and into your stomach. The patient needs to "cooperate" to have this all happen. That means, you need to go along with it AND actively swallow that tube. This sounds gross even if you aren't sick. It is a horrid vision if you are. 

Plus I hate the word "cooperate" when it comes to medical procedures. It makes me feel as though, if it fails, it is my fault.

Now, if you have swallowed an NG tube, you are a stronger person than I am. If you know anyone who has done this, they deserve life-long respect, admiration, and awe.

Here is the picture. My nose is clogged due to the chemo I am taking. Not a great start. And I am vomiting with only brief pauses, which means that the muscles in my throat are pushing things UP, not down. I am in the ER because can't swallow sips of water, much less a thick plastic tube that has already passed through nose-grossness. There was a doctor pushing this into my nose, and an assistant standing by with a glass of water and a straw. (They wouldn't otherwise let me have water, only ice chips.) 

The whole scene was insane. There must be a better invention. I asked them to knock me out, to give me anesthesia, anything to make me unaware, but no. They told me that I would feel better afterwards. I was skeptical. Finally, we agreed that I could keep vomiting, and they admitted me to the hospital.

My actual issue was a blocked intestine. If you think of your intestines as a one-lane, one-way highway with one exit, mine had a "road closed" sign, resulting in a major backup. Then, when my intestines and stomach produced their normal, regular digestive juices, those couldn't move forward, either. You can cure this by surgically freeing the blockage, or you can wait and see what happens, hoping to get lucky with it unblocking itself.

The nurses hooked me up to hydration to keep my kidneys going and we all settled in to see what course this would take. 

In the meantime, here is one way I survive my hospital stays: Every time I see the team of doctors, I ask them what things need to look like in order for me to be released. And then I ask them, what progress do I need to make that day toward achieving that goal. Finally, I focus every cell of my being, all day long, on achieving that progress.

Step one was to stop vomiting. However, everything in the hospital room - the detritus on the floor, the smell of the hand sanitizer, the shared bathroom - conspired to make me vomit. Still, I remained focused and achieved that goal.

After day 1 of not vomiting, the next step was to hold down clear fluids, meaning vegetable (or chicken) broth, apple juice, cranberry juice and jello. Gratefully, my husband brought the Whole Foods versions of these to me (another way I survive the hospital stays: food from outside). I still constantly felt like vomiting, but I held it together and finished 1/3 bottle of apple juice plus a large container of broth. I was quite proud of myself, but the team declared me too bloated to go home, and I was to continue on clear liquids. Argh. (I later learned that apple juice can make you bloated.)

By Friday, I was so done with being at MGH, and the doctors still didn't want to release me. Starting with chemo on Monday, I had been there almost all week, and feeling awful that whole time. On top of that, my new roommate kept repeating, "Thank GAWD I don't have cancer." I didn't even have a bed by the window, and I was getting a bit bummed out.

I lay in my bed, praying for I don't know how long. My back was to the door, and my eyes were closed. I tried to imagine being held, or being someplace safe....anything that helped me feel like God was near. I kept praying to feel His presence.

At some point, I rolled over and opened my eyes. Standing in the doorway was a short woman with dark hair, wearing a pink labcoat. She appeared to be waiting patiently.

"Can I help you?" I asked her.

"Would you like Communion?" she asked me.

Thank goodness I opened my eyes in time.

While I obviously miss so much, please know that I really treasure your being there, and appreciate your presence in all our lives. I am now home, feeling much better, and want to thank you for hanging in there with all of us.


Wednesday, October 5, 2011

Joy is back!

I'm so excited to say that my joy is back!!!

First, thank you for entrusting your prayers to me. I am truly honored to be able to deliver them to Lourdes and to pray them with you. Before I deposited them in their spot, I prayed them. (If you gave me something on paper, I didn't open it but prayed for your prayers in general.) Afterwards, I said rosaries for them, and lit candles. I even did the first Station of the Cross on my knees for them. At this point, I started to feel like I was becoming an old Italian woman, which, all things considered, would not be a bad thing.

Seriously, though, doing that was such a gift to me, and I have confidence that your prayers are heard and will be answered.

The town of Lourdes is located in southwest France, in the Pyrenees mountains. The geography itself is beautiful, but for a city girl, there are no restaurants to write home about, and the hotels are basic.  Winding our way through the crowds, from our hotel to the Sanctuary, we passed shops bursting with candles, rosaries, statues, holy medals and other religious chachkas. Our ears were filled with religious music blaring from speakers.

Upon entering the Sanctuary, the noise of the shops faded, replaced with the melody of Ave Maria floating through the air, the cadence of prayers, the murmur of rosaries. Or sometimes, louder than a murmur. I loved listening to the Italians - it was like poetry to me:

Ave Maria, piena di grazia, 

il Signore รจ con te. 

You can envision the Sanctuary like a college campus, but replace the academic buildings with churches, cathedrals, crosses and Stations of the Cross. The grounds expand to provide a feeling of spaciousness, while at the same time, enveloping everyone in the warmth of over a century of prayers. Except for a small bookstore and donation boxes for candles or for bottles to hold water, there is no commerce. Very few people talk on cellphones or text as they walk around or sit and rest. 

Last year, when I went to Lourdes, I focused on myself and my own healing. This year, I had a strong feeling that I was to go but not for myself. Unsure what that exactly meant, I decided to focus on your prayers and direct all my own prayers and actions toward everyone but me.

You know what - that was harder than I thought! It is difficult to be in a place of healing, in a place where almost 70 healing miracles have been documented by non-Catholic doctors and scientists, and to NOT ask for healing on my own behalf! But it was a good learning, a good discipline and good practice. There is something to be said for focusing outside myself. And I have a new respect for nuns, who basically do this as a career.

Plus, there is so much inspiration there, in the lives of Mary, Jesus, and St. Bernadette. That helped.

When I left Boston for Lourdes, I was pretty down and had lost my will to live. This is not simply because chemo was so rough; it was as though a switch had flipped inside me somewhere, and it was too dark to find it again and switch it back.

During my time at Lourdes, there was no earthshattering event. Returning home, though, I felt that something significantly shifted inside myself during my time there, and I am grateful for that. It literally feels like I have been touched by the grace of God.

I mostly feel like myself again. I even feel like a calmer version of myself, which is so nice. 

Like anything that causes a shift inside you - traveling to a different culture, an encounter with a soulmate, meeting your new baby - words are inadequate to describe the feeling.

But I want to you know, I am in such a great place, I love that this is possible. For whatever you are handling that might bring you down in any way, even if you can't pull yourself up in the moment, even if you feel like you are supposed to be down in this moment, please know that you never know what tomorrow or even the next moment will bring. I'll admit, that could go either way, but at least hope is back.

While I was having my crappy chemo week, before I left for Lourdes, the nurse called and convinced me to meet with Palliative Care. This has been suggested, off and on, for the past year and a half. Palliative Care is when you are aiming for quality of life rather than for cure. For a long time, I thought it meant giving up. And, last week, when I agreed to meet with them, I had, indeed, given up.

After I returned from Lourdes, I decided to take my decisions one moment at a time, and trust that, rather than have a plan, I would be guided toward the right thing to do at the time. So, I went to my appointments, but wasn't sure if I would be doing chemo.

I walked in feeling stronger, in a very different way then ever before. Strong in my center, as though everything would be fine, and I wasn't in this alone.

When the Palliative Care doctors arrived, I assumed they would offer me more drugs: "Depressed? Try this anit-depressent.  Stomach hurts? Try more Zofran." Like that. I hate that approach and wasn't sure how I would react. I decided not to worry about it and wait and see.

AND, they weren't like that at all. They listened carefully to my story and heard who I am. The lead doctor said that she could offer a menu of drugs, but that clearly wasn't the answer for me. She suggested two places to start:
1. Learn to accept and maybe even embrace chemo, because my attitude toward it is not helping me.
2. Try to replicate whatever it was at Lourdes that has moved me to this place.

Both of these are difficult for me. The first one has been suggested by many friends, several times over. It is like telling your kids that broccoli is good. They have to come to that on their own. Not sure if I can do this yet!

The second one - well, think about when you return from an awesome trip, one that has changed you in ways you could not predict or even describe. How do you keep from slowly returning to who you were before you left? You can't replicate pieces of what did it - it is the whole package together, some parts of which you may not even be consciously aware.

I do know that I need to nurture and grow whatever seed was planted in me while I was in Lourdes, and hopefully it will spread whatever blessings I got while I was there. That is my job now. Thank you for helping me get to this. And I hope you can personally feel God's blessings in this very moment as well.