Thursday, May 24, 2012

Time to Celebrate!

Thank you for all your prayers and good wishes. I had my PET CT on Monday, and I will wait until next Tuesday for the results.

Right now, though, it is time for a celebration.

My 50th birthday is this Sunday, May 27, and that is as good a reason as any to celebrate. I would love to celebrate with you. 

Since we can't all be in the same place, I have an idea for celebrating together.

You can join the party by doing one or both of these:

- When you wake up, consciously notice and express gratitude for something in your life. It can feel complicated or simple. It can feel small or big. You just need to notice and be grateful. If you can say it out loud, all the better!
Do something kind for someone (you or someone else), with joy in your heart.

The party will start on May 27 and continue for 50 days (July 16 by my calculations). This means, do one or both of these things every day. 
Of course, you can leave, and rejoin, at any time.

It might be fun if you want to post the things you are grateful for here, though I have no idea how complicated it is to do so. 

Or just email to me and I will post them anonymously. Sending one-word, like, sunshine or dessert, is totally cool and perfect and may inspire others.

BUT WAIT - there is more! If you are the kind of person who likes to bring a party gift, I've thought about what that could be.

Every single day, I feel so lucky to reach the age that I am. Countless people would give anything to celebrate this milestone birthday, especially children who are diagnosed with cancer. I also think it is really important to help support each other when and where we can. You have taught me that - I couldn't have come this far without your support. 

Combining these two sentiments, please consider a gift to the Back To School program at Dana Farber. 

This program hit home for me because I know how hard it is for me, as an adult, to re-enter normal life after even brief treatments. I know how my children experience stress when they return to school after I had treatments, and the disconnect  they experience between their reality and the reality of their friends. 

There is certainly an adjustment period when a child re-enter normal life after being treated for cancer. Teachers, children and other families are not equipped to provide this kind of support to the child or family. But the Back To School program helps with this. You can read more about the program here.

So, if you would normally bring a gift to a party, consider directing your gift this way and send a check, made out to DFCI (or Dana-Farber Cancer Institute) to 

Colleen Gleason-Epple
Dana-Farber Cancer Institute
10 Brookline Place West, 6th Floor
Brookline, MA 02445-7226

The memo should say Back to School Program.

Of course, there is never any obligation for a gift. I just hope you have fun with it. 

So, that is it! I look forward to your joining the party. 

Much love to you, and joy always.

Saturday, May 19, 2012

More tests

It feels wonderful to be off chemo, especially to have all this extra energy and extra time. Thank you for all your prayers and positive thoughts that got me to this point. They continue to help me stay calm, grounded and connected, which makes a significant impact on my daily life. 

It also feels wonderful to have no doctor visits! But, the past two weeks broke that little streak. I started bleeding where I shouldn't be - not that anyone should be bleeding anywhere. I went off to the gynecologist for an exam and biopsy. The biopsy came back showing colorectal cancer, so I contacted my oncologist and my surgeon. 

One thing about a cancer diagnosis - doctors, thankfully, move quickly. 

My oncologist called to say something like, "You really don't want to have surgery for this. You will end up with a colostomy bag." His tone made it sound like it was the worst thing in the world. When I reminded him that I already have a colostomy bag, we both got a good laugh.

My surgeon got back to me within minutes. She arranged a pelvic MRI, and two days later, we discussed the results. The test shows a tumor in my pelvis and a tunnel that goes from one part of my pelvis to another. 

Hmmm. What to do?

None of us are sure. There is always chemo. Surgery is a possibility, but it isn't pretty. There is a good possibility that this has been there all along and is simply acting up.

My last PET CT, almost a year ago, showed some "activity" in this area, so I will have another PET CT on Monday to see if there are any changes. I get the results of that scan after Memorial Day.

In the meantime, I feel pretty good in every way and am doing what I can to stay healthy. My transition to macrobiotics is coming along and I'm learning a lot. I love to cook, so food provides easy and fun experimentation.

When we built our home, I didn't care about square footage, electronics or sound system. However, I did care about the kitchen. I wanted an open, inviting kitchen with high-end appliances and was lucky enough to get a top-of-the-line, mammoth range that includes six gas burners and a huge oven. Bliss.

For about a year or two, I cooked like crazy. And then one day, I decided to go raw.

A raw food diet sounds simple but making interesting foods requires new equipment, including a dehydrator, a strong blender, and a couple of juicers. Of course, I wanted the top-of-the-line of each of these. Because raw is what it sounds like - no cooking - Tiron wondered if our massive stove would stand like an art object in the kitchen. I continued to use it to make meals for Tiron and the boys, but with nowhere near the complexity or frequency of the past.

The raw diet served me well for a few years and I made good use of all my new appliances. Then suddenly, I couldn't digest raw foods so became interested in a macrobiotic diet and lifestyle.

Immersing myself in this, I discovered that my kitchen life would not be complete without a pressure cooker. Top-of-the-line, of course. 

Tiron wondered out loud how millions of people in the world cook perfectly fine rice and beans without a pressure cooker. I assumed that was a rhetorical question and not an objection.

Before I got around to researching and ordering the pressure cooker, our family hamster arrived. She arrived on a Sunday, and when the boys suggested naming her "Lucky," I thought, "She will be lucky to make it through the week."

That Tuesday, a mere two days later, Lucky was in her ball, rolling around our floor. We weren't playing close attention and then….we noticed the ball was open and empty. No Lucky. Panic ensued. Namely, my panic. And irritation. I didn't really want a hamster, and I certainly didn't want a hamster loose in our house. Deep breath. Stay calm.

Because the ball was near that lovely massive kitchen range, we looked, and found her, underneath. J-man and I waited quietly until she finally peeked out. J-man pounced on her, but Lucky was faster and retreated to her new home.

We placed food and water on the floor in front of the range, both to lure her out and to help her stay alive. Now, when I did cook on the stovetop, I had to stand about a foot away to accommodate the food and water setup on the floor. Though I rarely bake, now that I couldn't use the oven (for fear of baking the little thing underneath), baking was all I wanted to do. We set up a contraption to try to catch her in the night, which took up even more floorspace. Our traffic patterns in the kitchen revolved around these items.

The most surprising event was finding Tiron sitting quietly in the dark for about 45 minutes, waiting for her to come out.

The first night, I arrived home to his excitement. "I caught the hamster!" he said. Ever the techie, he added, "On video!" I tried to raise my excitement level to match his.

I began to view our stove as the most expensive hamster cage ever. Lucky had it pretty well - water, food and freedom from overly-enthusiastic little boy hugs. But on the second night, Tiron actually did catch her. Physically.

We are all back in our respective places: The hamster running in her cage, the dog sleeping wherever he wants, the boys playing outside (now over the novelty of their new pet), Tiron working in his office instead of waiting in the dark, and me, in the kitchen awaiting the arrival of my pressure cooker as I figure out these new recipes.

I hope that you are also exactly where you are meant to be.

Many blessings and love,

Monday, May 7, 2012

Tumor marker stable

I am happy to share the news that my recent blood test showed my tumor marker at 12.0, which is considered to be stable from last month's 11.6. While I would prefer, for example, "stable at 11.0," I am so grateful to God and to all of you who continue to carry me, my health and my family in your prayers and positive thoughts. My next test is a CT scan near the end of May. Keep on praying. Prayer is so good and immensely helpful. Positive thoughts are fabulous and lift everyone they touch.

After a few weeks off chemo, I realize that I feel a bit ungrounded without my strict chemo schedule. Possibly, I miss the structure it adds to my life, or the feeling that I am doing something really hard and therefore, everything possible. I'll get over that. I am more disoriented by feeling less connected to God and the spiritual side of my life. It was as though I walked into an amazing room, and now I don't see it. The change surprised me and I cannot figure out how to step into that space again.

In the meantime, life continues to move along. I have the chance to incorporate activities that have been on my to-do list: start a macrobiotic diet, enrich my meditation and gratitude practice, write more, and learn to row. Somehow, "watching Downton Abbey" snuck into my days and I became addicted to the show. Unplanned, but fun.

Also unplanned: We got a hamster. When our first son turned three, the second was born. When the second turned three, we got a dog. When I noticed this pattern and realized that we will soon have the dog for three years, I knew that we needed to add another member to our household. 

Tiron or any state agency would not be supportive of adding a child to our family. A second dog is out of the question for now.  Then I saw that a friend needed to find a home for their hamster. I surprised myself by jumping on it faster than a good buy on RueLaLa. I felt that same excitement combined with the same anxiety that someone might claim it before I do. I immediately emailed my friend expressing our interest. Later that night, I casually ran it by Tiron. He wasn't enthusiastic but didn't vehemently object. I think his words were, "That isn't what I was expecting." Or maybe, "I can think of worse things." Regardless, my mind translated his words into, "Sure. Whatever you want."

The boys excitedly discussed names for the hamster. The dog had no idea that his perch on the pedestal of "only pet" is about to go away. The babysitter, I think and hope, added the care and feeding to her list of things to do. Tiron appears to be relieved that it doesn't need a daily walk. And I'm happily stepping outside my comfort zone by letting a rodent-like creature live in this house. Add that to my list of things I never thought I would do.

That is the kind of surprise that I welcome.

Still feeling unmoored, I went to Mass and prayed to get some insight into how on earth to reconnect. Then the priest opened the Mass by saying that the readings today focus on maintaining our connection to God. Exactly what I needed! Once again, if I calm down, stay patient and provide even a sliver of opening, the light can shine in. I'm not yet seeing that beautiful room, but at least I feel like it is possible.

I hope that you are finding space in your life for the activities on your love-to-do list, and that you also have some openings for happy surprises. I hope that everywhere you look, you feel the blessing of the connections in your life. I do feel so blessed to be connected to you.

With love and gratitude,