Tuesday, July 20, 2010

Even in Routines, Changes Abound

Thank you for hanging in there with me. This road is starting to feel long, though I'm not complaining about that! Just realizing that, if it feels long to me, I suspect that it may feel long to you as well. Please know that I deeply appreciate your being along for the ride, keeping me and my family in your prayers, and doing so much for us.

Friends have asked about the status of the HIPAC (hot chemo) surgery that I was considering. This is a huge surgery, and since things are going relatively well, it is hard for me to jump into it. But, it is still on the table. I need to get a liver MRI first (to check out the spot on my liver, though the PET CT seems to show it is okay). So the HIPAC is on hold for now, and I don't need to make an immediate decision about it.

My two-week cycles are starting to feel routine, but there are definitely changes. One big change (on the chemo front) is that my usual nurse had a baby, so I got a new nurse. Though I knew that this was coming, I still burst into tears...then moved ahead.

The big, positive change is that I had absolutely no stomach pain this past cycle. Yay! I know that more than a few of you were helping to pray for that. THANK YOU! It was like I got an extra day of life.

We had alot of changes in our household, too. Aidan turned seven, and Julian turned four (on the same day -- I like to say "Thank Heaven for 7-11"). I was initially diagnosed with this when Aidan just turned four and Julian one, and I sometimes wondered if I would see Julian turn four. That alone was worth celebrating.

The day before the boys' birthday, we made a trek to Cambridge, VT to pick up our dog! I'm not a dog person or even an animal person. And I like things to be clean. No one could be more surprised than I was about my sudden deep desire for a dog.

After my diagnosis in February, I felt the boys should have a pet. A cat was out of the question (due to allergies) and I immediately ruled out a dog because it would have to live inside. We considered rabbits, since they could live on the screened porch and outside, then decided it wasn't a good fit. We tried to get chickens, but the coyotes got to them before they reached our house. Then I met a friend's dog, and suddenly my view and emotions changed, and I got a laser focus on that.

Kenobi (named after Obi Wan from Star Wars) is a 7-month-old cockapoo. He arrived housetrained, relatively calm (though scared out of his wits), and willing to do what I ask him to do. That alone is a refreshing change for me. Plus, he seems to be smart, which I appreciate, and adores me, so who can resist that? The boys are thrilled with him. Tiron is graciously adapting.

Another big change is my mother's cooking. My parents have been generously traveling from Pittsburgh, PA to Cambridge, MA for one week every month, which basically amounts to every other chemo session. They are gifted at keeping the house running, and my very Italian mother is a fantastic Italian cook. Growing up, we always ate all Italian. I didn't see a bagel or Chinese food until college.

But she jumped into preparing raw foods, and now routinely spouts beans, makes raw hummus, and uses the dehydrator to craft incredible crackers. She starts with my recipes, then enhances them to make these amazing creations that I can't replicate. She even juices wheatgrass and greens. I admit that I am impressed. She still makes meatballs, sausage and ribs for everyone else. The meat dishes aren't tempting to me, the spaghetti is, and I like that the combination makes our house smell like my memories of growing up.

I hope that your summer is going well, with lots of beautiful moments, big and small, and that you are riding the waves of change as they happen. I also hope that you can feel the adoration that surrounds you, starting with adoration from me.

I have chemo again this Tuesday (July 20), and really do appreciate any prayers, positive actions, even smiles on our behalf.


Monday, July 19, 2010

An Encounter in the Waiting Room

I continue on the raw food diet. I'm not perfect at it, but I do stick to it most of the time. I try not to be obnoxious about it, though I may have crossed a line last week.

I sat in the waiting room near a family of four. The father was in his late 50's or early 60's. He was joking about waiting so long to see the doctor that they probably had pajamas waiting for him. I looked up and laughed.

From there, the parents and I started chatting about the things most chemo patients share. He looked good to me, but shared that he lost 40 pounds so far. His wife told me that she was 59; I could feel her positive energy, as well as her disbelief that they were even here. His daughter and son, in their late teens or early 20's, sat next in the line of chairs, each occupied by a book or their iPhones while they listened to our conversation.

We chatted about the length of the appointments, the fact that chemo wasn't working for him, how we both hate the IV fluids they give for dehydration. She was more factual, though cheery. He tried to make light of it all.

At one point, the snack cart came around, filled with items that I used to think were totally yummy: roasted peanuts, Lorna Doones, potato chips, apple juice, V-8...I declined. The family members each took a few treats. They advised me, in a friendly way, that I should take what I liked and save it for later.

"Like we just said, you don't know how long you'll need to wait here."

In response, I blurted out, "I'm not doing sugar right now."

They all stopped; even the kids looked directly at me. They all had hope in their eyes that broke my heart. I recognized that feeling; I do it myself, looking for a "cure" that might be out there, something I don't yet know or haven't heard about, a lifeline.

After what felt like a long silence but was probably only a moment, the wife softly asked, "Did the doctor advise that?"

I wanted to reassure them. Even more than that, I wanted that look in their eyes to go away. Plus, what do I really know. I am trying everything I can do that feels right to me, but maybe it isn't right for everyone.

"No, this is something I'm doing on my own." It is true, but even as I said it, I wondered, should I share more information? Is this something that could help him?

Then the father joked, "Sugar will make you even sweeter."

Again, something I recognized. The patient telling a joke to make everyone else feel better.

It broke the mood and we chatted lightly again until we were all called back into our doctors' offices.

As I was leaving my appointment, I caught a glimpse of them in their doctor's room. Their mood was no longer light, there were no smiles, and I said a silent prayer for them as I walked away.

Tuesday, July 6, 2010

Chemo status quo; Friendships and Memories

This has been a really great two weeks. My last chemo (two weeks ago) went, well, as chemo goes. Overall pretty smoothly.

My hair has thinned so my head gets cold, One of the women who works there is Muslim, and she taught me how to tie a headscarf. And when I went to MGH for my injection on Friday (I get an injection to help increase my white cell count), the nurse did an amazing Reiki healing. So the staff continues to be really supportive.

I got those awful stomach cramps again this week, but I was able to manage them with meditation. It was pretty amazing. I isolated myself from everyone else and concentrated only on my breathing. At one point, I found that I could separate myself from the pain, and, in that calm, I started to notice things. For example, I started to notice the feelings that would happen immediately after the pain would subside, which I never noticed before. And I noticed that the pain moved, slowly, along the path of my intestines. Yes, I was still out of commission for a few hours, but it was way more manageable than It had been in the past. I would love to be able to replicate this with any other pain -- it was pretty cool.

Other that that, it's been an amazing two weeks. Lots of celebrations and visits with dear friends. I feel so lucky to be able to do that, and to share these experiences together.

Because of that, I started to think about our lifetime of experiences with so many different people, and the subsequent stories we all have about each other. At the risk of letting you know how goofy I was at the age of 12, I share this email from a sixth-grade classmate. He and I haven't been in touch in YEARS, and I haven't thought about this event, oh, probably since it happened, but it was a memory that came right back to him:

We're on a holiday road trip, and I heard a song on the radio that brought back a memory... Remember the song "Billy Don't be a Hero"? Well, I recall that in sixth grade we had to pick a song and make drawings that told the story of the song, then stand in front of the class and flash our drawings cue-card style while the song played. You...chose "Billy Don't be a Hero" and every time the word "Hero" came up, you had a drawing of a sub sandwich, very well drawn with a colored pencil. I don't even remember what song I chose...

If someone asked about sixth grade, I don't think I would have recalled either the assignment or the song on my own. But, through this shared experience, he obviously holds a story of my life and a piece that is truly me from that time. I was really touched by this and suddenly started to notice it everywhere.

I was honored to witness this at a party this weekend, where the host couple had friends from all stages of their lives. I got to watch my three-year-old son at parties with his friends from school, where their comfortable and fluid interactions show how deeply they already know each other. And I marveled as my friend from third grade, who recently returned home after a one-month visit (along with her husband and two daughters - how amazing is that!), randomly recalled shared experiences that are like gold.

I'm grateful for all these friendships and the memories those friends hold, events that I either don't recall or that reside in the dark, dusty corners of my mind and heart. Those are places I don't typically explore without a professional. It's way more fun with a friend.

Thank you for all the memories you hold, even as you might recall one right now! And I hope that, soon or during this summer, you can spontaneously go to some dark dusty spot in your heart with a friend, find a treasure and smile, and barrel ahead to create new memories!

Thank you for all the prayers and good wishes, and keep them coming!

Love to you,