Sunday, September 25, 2011

Back on chemo offer

Lio by Mark Tatulli

This comic captures a part of my life lately. Thank you for being my safety net, especially when I am hit into a hole. 

The events of the past few weeks highlighted, for me, how important it is to have someone present in your life. Your notes and passing conversations mean so much. I couldn't answer from the dark place I was in, but I really appreciated them and read and re-read them. 

Even if you didn't reach out, please don't worry about it. Before I entered this crazy cancer world, I had no idea of what to say, how to say it, etc. I still don't know what to say when I encounter this with someone else.

Thank you also for signing up to bring dinners to us. We initially put two months of dates on the calendar, just to see what works. Unfortunately, we will need dinners past then, so once we figure out the routine (you'd think I'd know this by now!), we'll send out more dates. Stay tuned if you are interested!

I was initially relieved to start chemo this week. When the surgery was cancelled, I found myself in the odd position of actually hoping that I could get chemo. How ironic is that?

In spite of my gratitude for it, the treatment hit me with a bang. Chemo is cumulative so I understand, for example, the 10th treatment feels harder than the first. But, I thought that after taking such a long break, this first treatment back might feel more like my 20th. 

No -- it was more like my last treatment in January, picking up exactly where I left off.

I was sick, didn't feel like myself, couldn't think clearly, and didn't even get out of bed for almost three days. Once again I found myself with the familiar runny nose, the inability to clear my throat, the chemo taste in my mouth and the smell on my skin. On top of that, my tumors are painful and I have an almost constant stomachache. Those last two are new experiences for me. 

The kids seemed to deal with it well; they needed to be near me and played around me and were generally well-behaved and easy-going in my presence. It didn't matter if I could actually participate or even move - they dealt a hand for me in games of Uno and laid my cards on my belly. I was a grateful recipient of their spa treatments (Aidan's newest business idea), and their captive audience as they read books. They were calm and sweet and kind. 

When they weren't with me, I could hear their stress. They didn't want to leave me to go to school, they didn't want to play anywhere but near my bed. They would fight with each other and with Tiron over the smallest detail. 

This whole situation stunk. After four days, I decided that I couldn't do it again. I just couldn't do any more chemo. It was taking too much of a toll on me and on everyone around me.

I started to think: Everyone dies. Maybe it is better to just get it over with. There is something to be said about living your life without the pain and sickness of chemo or other treatments.

During my three trips to the hospital this week, I saw people in various stages of physical distress. Some were in wheelchairs, some on stretchers, others sitting silently with their discomfort. I tried to see what made them continue on each day, but I couldn't uncover anything

Yesterday, Thursday, I pulled my sorry butt out of bed and dragged it to yoga class. I spent the day forcing myself to consciously pay attention to and be thankful for specific things in my life, trying to find reasons to move forward. My yoga instructor was back. My acupuncturist offered to treat me while on her maternity leave. I am immensely grateful for these things, but they weren't reasons for living.

I went completely off my diet. I ate cheese, wheat crackers, watermelon, chocolate. I had a glass of wine. Those were good, but not as satisfying as I remembered. That night, I attended Curriculum Night for parents (also known as Back to School Night) at the boys' school, primarily in search of brownies.

Our two boys attend the school, one in third grade and one in Beginners (pre-K). Tiron and I split to cover both classes. Tiron suggested that I attend the third grade class discussion because I am usually the one to help with any academics. I told him that I wanted to go to the Beginners class tonight. I thought, but didn't say, that maybe he soon would be the one primarily helping with third-grade homework.

Once in the Beginner classroom, it was good to see the children's work and connect with the other parents. The teachers did an amazing job of presenting the Beginners class information. It was calming to hear their warm description of what the kids learn as they play with blocks or devise a dress-up scenario. We learned how the children will begin to collect and graph information, how they will write a story with their own made-up character, and how they will typically navigate friendships as the year progresses. 

I read Julian's description of himself: He lives with his brother, Aidan, his momma and daddy. He wants to be a race car driver when he grows up. The teacher explained, "He initially said that he just wants to be a grown-up." Me, too, honey. Me too.

To conclude the evening, the teachers ran a slide show of photos from the first couple of weeks. They played songs that, combined with the photos, make me teary (like, These are the Days to Remember by Natalie Merchant). I enjoyed the photos of Julian interacting with his new friends, swinging on the monkey bars, having a snack, reading a book, building a tower. I got to see the joyful faces of his classmates and realized that I totally love so many of them and am falling in love with the rest, as they are slowly making their own way in this new environment with joy and pride.

And that brought me back. For me, life is so much about experiencing these unchoreographed, unexpected moments, filled with love and shared with others I don't yet even know but who somehow become major part of our lives -- these surprise connections in each and every day. There is no way to know what is ahead of us, so we forge on and are often so fortunate to be bathed in joy and love.

I am happy for whatever circumstances allow us to connect. Your presence in my life brings me strength and joy. Please don't ever underestimate the power of that.

I am very self-conscious about taking more than I give lately. But I can offer this to you:

On Saturday night,  Tiron and I return to Lourdes. There is a spot where I can tuck a note: a request, a blessing, a prayer -- whatever you like. If you want, I would be honored to bring that for you or for someone you care about. 
I know this is last-minute, but if you can get it to me before Saturday afternoon, I will bring it with me. I promise that I won't read it!
Or, you can email it to me while we are there, though it would be more difficult for me not to read that if you want it to be private.

In the meantime, take good care, enjoy the day, and please know how powerful your presence really is.

Much love and many blessings,

Friday, September 9, 2011

Surgery cancelled

Thank you for changing your plans and making room to help us. I am so touched and grateful for your generous heart. I didn't realize that help could come in so many forms, and in so many ways.

Before you go too far, I need to tell you that the surgery was cancelled as of tonight. Thursday's PET CT revealed two new tumors, one of which is outside the surgical area. It doesn't make sense for me to go through this surgery if we aren't going to get all of it.

There was alot of swirl here tonight, but I am very grateful to my MGH surgeon and my UMass surgeon, both of whom took their time on a Friday night to go over all this with me.

We will decide on Monday what to do next. 

Thanks for riding this roller coaster with us. I'm feeling okay - a little stunned, but basically like this surgery wasn't really meant to be. And I'm glad that we found these tumors before I got cut open. The kids have absorbed the stress of all the sudden phone calls and medical conversations, so we are managing that.

If you are still focused on Sept 16, please send your prayers and good vibes to my soul sister, Shira, who will be embarking on her treatment that day. She is headed for China to do a really cool treatment that they do here in the US, but not on our kind of tumor. They are doing these treatments in China (as well as the UK and many other countries) with good results. I'm cheering her on and hope you can, too.

More to follow. Thank you for staying tuned!


Wednesday, September 7, 2011

The path to surgery is paved with tests and good intentions

Thank you so much for your notes of support, your suggestions, your funny stories. Thank you for being there and for helping me to feel less alone in all this.

I did get to move the surgery date. It is now on Friday, September 16 at UMass Worcester with Dr. Laura Lambert. I expect to be in the ICU for two days following surgery, then in the hospital for about 8 days after that. The recovery itself, I'm told, is 3 - 6 months. Of course, I'm aiming for two months.

I am feeling so great right now. It is hard to imagine how I will feel in about two weeks.

For those of you who have asked what you can do, here is my little list:

1. First and most of all, I can use your prayers (or whatever your version of this may be). I welcome prayers for healing, for guidance for the doctors, and for anything else you are inspired to pray for. I cannot overstate the difference that this makes in my healing. I know this is how and why I have come so far already. I thank you from the bottom of my heart for your part in this for my past surgeries, and if you can do this again, it will be huge for me. 

2. Physical presence at the hospital. Once I am out of the ICU, I am told that it would be very helpful for me to have someone in the room to get help if I need it. I know that the hospital is one hour outside of Boston, and that this is alot of hours out of your already busy schedule. AND I won't really be up for conversation or even much to look at. You'll have to bring your own entertainment. But it is helpful and maybe you can get some work done or a book read? This also entails picking up food from my mother and delivering it to me.

3. Meals at home. My parents will be running our household while I am in the hospital. I am not sure how long they will stay after I return home. At that time, we can definitely use some help with food, mostly for the kids and Tiron. 

4. Nighttime help. We are looking for regular help with the kids for nights and weekends. If you know anyone looking for that kind of job, send them our way!

5. Last but not least, if you are involved with our children, we appreciate any support you can give them during this time.

I think that covers it. Let me know if I forgot anything!

These past two weeks feel like they have been all about new beginnings, in a way. Along one vein, we were finishing up summer vacation with the boys, getting ready for the beginning of a new school year. Along another vein, I was finishing up my chemo vacation and getting ready for the next step in healing with this surgery.

Last week was truly the week of medical tests. I was in the ER on Tuesday (more on this later), had an ultrasound on Wednesday to determine the source of the bleeding (which, of course, stopped two days before the ultrasound), had my pre-surgical tests in Worcester on Thursday (checking my heart, etc. to make sure that I was in shape for surgery), and a PET CT scheduled for Friday. My psyche must have said, "Enough" because I mistakenly ate a rice cake before the PET CT, which was strictly not allowed. So, needed to reschedule that.

The ER visit....Warning: This will be TMI for many of you, so you may want to happily sign off now.

On Tuesday night, my stoma started "growing." My stoma is the polite word for the piece of intestine that sticks out of my abdomen. It has grown in the past, and then gone back to its normal self. So I didn't initially worry about it. Around 10 p.m., I was suddenly aware that it had grown to the size of a grapefruit. It was freakish-looking, and it was so large and heavy that it took two hands to hold it up. 

I avoid hospitals but I knew I had to get to the ER. I watched the kids sleeping, thinking that we finally got them to some semblance of security. Now, we will once again disappear during the night, and they will wake up to the unexpected. I felt so badly for them. I hoped this would be a quick visit and that we would be home when they woke in the morning.  We couldn't wake them to let them know we were leaving. That would require taking the time to orient them and explain what was going on, and I didn't feel I had that time.

We called someone to watch the boys, and Tiron and I raced to the hospital in my old car, as opposed to his new car. The kids are not allowed to eat or drink in that car. There was no discussion about allowing a freaky intestine that looked like it was about to blow.

The nice folks at MGH wheeled me into the ER while Tiron parked. I went through the check-in process, all the while holding this thing that was getting bigger and drier and darker. Drier is not good. Darker is worse. Darker means that the blood supply is getting cut off. And, I learned, it wasn't simply "growing;" my intestine was literally coming out of my body.

I have a pretty high pain threshold, so on a scale of 1 - 10 (10 being the worst pain ever), I told them it was a four. Fine. I got put in the waiting room with everyone else. Then I realized....I can't politely wait my turn. And, I didn't do this on purpose, but here is what happened next: I started to act like I was giving birth. 

I got out of the wheelchair and paced. I started screaming. And then screamed louder. A nurse came over to shut me up and I showed her what was going on. (No one wanted to see this before then, and I don't think she did, either.)

Her eyes got large and she ran to find a room for me. They soon wheeled me past a large number of patients in the hallway, waiting for a bed. While I was glad to get fast service, I wasn't so glad to need it.

I also didn't want to need it at the end of August. All my doctors were on vacation, and the new residents had been there only two months. Two residents were checking me out. By my estimation, one was a third-year surgical resident. I'll call him Max. The other doctor seemed like a first-year resident. I'll call her Cindy.

They stood on either side of my bed, examining this enormous, weird thing on my belly. Max would politely listen when I talked, as if somewhere in his training, someone told him that he had to listen to the patient. But I never got the feeling that my words got through. 

Cindy started trying to push the growth back into my abdomen. I didn't watch what she was doing, but I was already in alot of pain and that hurt, too. I'm comfortable dealing with pain, but I scream. I don't mind screaming, but it seems to upset everyone else. Since they couldn't push it back in without my screaming, they stopped. Max decided, a bit too eagerly in my opinion, that I needed emergency surgery, and he left to assemble the surgical team.

Tom arrived to hook me up to an IV. I asked him to use the port in my chest rather than a vein in my arm, and he readily ignored my request, heading straight for my arms. Thankfully, Tiron intervened and convinced Tom that it would be much easier to use my port than to find a good vein. I hate that helpless feeling as a patient, and especially feeling like I have no voice. 

All the while, my mind was racing. I need my limited veins for my big surgery, not this one. If I have this surgery today, it will put off my other surgery, which is more important to my life. Plus, I would not be home for days. Yet another instance for the kids -- they go to sleep, and who knows when they will see their mom again. Not exactly your ideal childhood. I would have to reschedule my next-day ultrasound. And my upcoming PET CT. My mind was trying to handle the logistics.

Cindy returned to my bed. "I saw this doctor once push in a hernia. She's incredible." She looked at me a little shyly. "It's a long shot. Would it be alright if I went to find her? I don't know if she is even here, or available."

"Sure," I told her. Why not? I thought. I live for long shots. Tom had given morphine to me, and Zofran (which I hate), and I was now a little easier to be around.

And then, Karen Kim appeared. It was like the sky was blue and the heavens parted and there she was, next to my bed. Outside my curtained area, the surgical team assembled. Anesthesia was hovering. The surgeon was pacing. He told Karen that she had one shot and had better hurry. They were ready to take me in. Karen calmly and firmly told them to wait, and not to pressure her.

She and Cindy stood on the same side of my bed. They adjusted the bed so that my head was lower than my feet, and I closed my eyes. I could hear Karen tell Cindy that this requires patience, and I listened as she calmly described what needed to be done. I don't know who actually did it. I remember seeing the guys outside, peeking at me through the curtain. And then, suddenly, I felt all better, and I heard Karen say, "It's done. What do you think?"

The other doctors came in to see it - there was alot of disbelief. And alot of relief, but that was mostly mine. I was promptly discharged. They needed the bed.

A few days later, I drove past a man holding up a sign. It said:
Your change
Can change
My life.

I've been too cynical to believe that small change can actually change someone's life. Then I remembered my hours in the ER, and the risk that Cindy took, trusting her idea and going for it. Because of her, we returned home before morning. I didn't have to postpone my big surgery. The act of one person during a night of many acts in a busy ER, her "small change," literally changed my life.

Your prayers do, too, as well as your presence. I don't know how I can repay you. My gratitude is huge. Thank you.