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. 

http://adventures-in-colon-cancer.blogspot.com/

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.

http://www.dana-farber.org/Pediatric-Care/Treatment-and-Support/Patient-and-Family-Support/Back-to-School-Program.aspx

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.

Marie

On the rebound

I had my first chemo session at Dana Farber and all appears to be....pretty good! Not that it was a walk in the park, but I haven't vomited yet so that is good, and I feel like I am on the rebound.

Thank you for all your good wishes and prayers. It definitely got me over the hump. 

When I initially learned that I needed chemotherapy, four years ago, I didn't want to go to Dana Farber. Everyone there had cancer - I really wasn't ready to identify with that group, or to regularly see people in various stages of disease. In the past couple of years, I must have adjusted my self-image. So, I didn't have to gear up much to go, and I was even looking forward to a new environment.

Or so I thought. On Tuesday morning, prior to leaving, I was snapping at people more than usual, but hey, they deserved it. And maybe I was impatient with the kids, but perhaps they were taking too long to get ready for school. 

BUT, when I started to tell my mother how to cook, I realized that I crossed the line into insanity. Or stupidity.

If you have met my mother or been graced with her cooking, you know that there is nothing I can do to improve it. For those of you who don't know my mother, here are two bits of information that might give you a little context:
1. She was born and raised in Italy
2. She cooks almost all day long, stopping only to clean up, and she makes everything from scratch

I eventually got off her back and into Dana Farber. Again, everyone there was extremely kind and patient with me. I didn't even mind going into the building. I had a surprise visitor who has become a friend (woo hoo - Thank you!) and met up with another friend who is also doing chemo there. 

Usually I feel so nauseous just going into chemo that I can't swallow the anti-nausea meds. But this time, for the first time in a long time, I was able to hold that at bay and swallow the pills they gave me. Thank you again for your prayers for this! 

The pills knocked me out and I slept through chemo, then got wheeled out in a wheelchair because I was still very out of it.

Ugh - just writing this feels gross.

My chemo regimen is the same: I went home with my own little personal chemo pump, that I wear for two days. They gave me one that is smaller than the one I had been using for the past few years, and that was nice. Maybe that is a very thin silver lining, but I'll take it. 

After about 48 hours of wearing this pump, I can opt to disconnect it from my body at home. I prefer to have the nurses do it in a medical institution. I'm not good at it, and, I want all the medical stuff OUT of my home. 

So, a friend drove me into Dana Farber, and they gave me a seat while we waited for the machine to finish transporting the last few drops of chemo. Then I got an injection to boost my white count, and went home to shower the whole experience away.

Now I'm on the upswing. That doesn't mean that I feel great, but I am out of bed and walking around. I got to attend the boys' Holiday Assembly at school. And my stomach and mind are finding their way back to normal. This process may take a few days, but I'm happy to be on my way.

I get three weeks off until my next chemo (January 3), so I can enjoy the holidays with my family. I am really looking forward to the downtime! 

Thank you for your prayers and thoughts and smiles and warm wishes! Have a warm and wonderful holiday spent with those you love, and laugh when you can.

Love,
Marie

Chemo on Tuesday...

Calling on you again - my first chemo session at Dana Farber will be tomorrow, Tuesday, December 13.

I arrive at 2:00 for a blood draw,
2:45 is my doctor appointment, then
3:30 is the scheduled time for my drip to begin.

Thank you for any and all prayers and positive vibes that the chemo is effective and that the anti-nausea drugs are, too! Even just a two-second prayer right now would be huge. Thank you!

With lots of love and gratitude,
Marie

No chemo on Monday!

I would normally have chemo tomorrow (Monday, December 5) but my schedule shifted again and I will instead have chemo next Tuesday, December 13. If you were keeping track and about to send prayers and positive energy, thank you. Last time around, your prayers and thoughts made for a much smoother chemo week - thank you for that. I was able to get out of bed and although I still felt quite nauseous, I could function. And then, it just got better from there! So thank you for your very positive impact on my life.

As a group, my daily life changes because of the positive energy from you. When I started down this path, I had large reserves of my own energy and hope, larger than I knew at the time When something happened, I unconsciously dipped into my reserves to bring myself up. But since September, it seems that my reserves are slim and sometimes none. 

Without these reserves, two new supports shone through. One is the power of God. I realize I am carried by this on a daily basis, but sometimes my awareness is stronger than others.

The other is the power of a group of people who are praying and sending good energy my way. The difference you make is tangible.

I know you can feel varying energies with friends and colleagues. Being around some people can pull you up, and being around others, however much you love them, can pull you down. Being in some environments is life-giving, while other environments suck the lifeblood right out of you.

I started to notice this more and more when going in for chemo. For whatever reason, I got depressed even walking into MGH lately. There was no one specific reason; it is more of an intangible feeling. My oncologist is caring, very smart, and knew my history. Though my rock-star chemo nurse switched working days, the others nurses were there for me, and the institution itself is top-notch. But when I entered the building, my entire body sank.

Still, it took about a year before I had the energy to change the situation. It is much easier for me to stay stuck in the way things always have been, especially when I can rationalize why I am staying. I know, though, when I start to do that, it is indeed time to make a change.

Fortunately, we live in an area with several great options, and, last week, I rallied and got to meet with an oncologist at Dana Farber. From the start, things felt better. When my friend and I drove into the parking garage, we planned to self-park but accidentally drove into the valet line. No problem - the valet moved the cars so we could drive through, with a pleasant tone of voice and without eye-rolling or eyebrow-raising. We entered the new building, where people cheerfully directed us to the right floor. And when I asked for a bottle of water (not noticing the sign in front of me that said "Refreshments"), a gentleman got one for me with good cheer and no sarcasm. The patient sitting next to me asked if they had Scotch, too. 

The oncologist was easy to talk with, knowledgable and direct. He shared his positive energy and gave all the time I needed. I left the building feeling pretty upbeat. Of course, I didn't actually have chemo that day, but that's a detail.

I am fortunate that all my doctors, at MGH, Dana Farber and Beth Israel, know each other well and work seamlessly together. Even if I am not working routinely with the doctors at MGH, it helps my emotional transition to continue to consider them as part of my team. 

To remain on schedule, I should have chemo this week. But, the boys have two weeks of vacation at Christmastime, and I'd love to spend it with them if I could. The oncologist was comfortable jiggering my chemo schedule for December to make that happen. So, rather than chemo ever other week, the next two sessions will be at every three weeks, and then, in January, I start every other week again. I know this sounds convoluted; don't feel like you need to follow it. 

The plan is to keep doing chemo and see what happens before determining a next step. This is more uncertainty than I would choose to live with, but I guess I don't get to choose. So, I'm along for the ride.

If you don't mind, I'll send out a reminder for prayers, etc. before December 13.

In the meantime, please know how incredibly grateful I am to have your support. You are a huge part of my healing team, even if I don't see you very often. It feels a bit like I have fallen backwards without knowing whether I would be caught, then felt a zillion hands catching me. Thank you. And I send out all my positive energy your way.

Much love and light,

Marie

Visit to Dana Farber

If you wrote to me last time around, please know that I read and appreciated every single email. It really lifts me up. The last round of chemo knocked me down hard and I couldn't answer emails or write anything. And then, when I started feeling better again, the kids started school vacation and it was like being on a moving train -- I just couldn't jump off. Plus, it was kind of fun to pretend for awhile that I wasn't a patient.

I took an extra week off chemo during the holiday. I cannot believe how good I feel from just one more week off! I feel like I have more patience (though my husband disagrees, but whatever, I feel good). I got to visit family, go skiing with the kids, take the dog out for walks. It was great!

And, I was able to consult with another oncologist, this time at Dana Farber Cancer Institute. I had spoken to my regular oncologist about options for treatments -- should I continue on this every two week cycle? Should I stretch it to every three weeks since my numbers are good? Should I take a "chemo holiday" to let my body recover from all the chemo? What are the risks and benefits from any of these paths?

I always think that another smart mind is helpful, plus I'm interested in working with someone who views cancer more as a chronic condition than a fatal illness. So, I was lucky to be able to pull some strings (thanks, Julie!) and see Julie's oncologist at Dana Farber.

Dana Farber is a sobering place from the moment you pull up. I see weathered women in wheelchairs and on oxygen and cannot help but wonder if that will be me. I see children going in for treatments, and my heart breaks into a million pieces. And, while I like to deny it, I have to face the truth that I am part of this group.

Every single worker I encountered at DFCI is unfailingly nice and helpful. The valet patiently explained how their system works. It's no different than any other system, but he still explained it nicely and didn't treat us like we were idiots.  The woman who checked me in didn't even imply that I was incompetent for forgetting my Dana Farber card; she simply smiled nicely and handed a new one to me. The person taking my vital signs was upbeat without being annoying. 

The waiting rooms are PACKED. I guess that says something about cancer in our society. Still, the other patients were nice, and some of them were chatty. The Pittsburgher in me enjoyed that. 

The doctor (we'll call him Jay) was running late, but I was glad to see him. He reviewed all my written records on-line through the inter-hospital system, and my rock-star radiologist husband had all my radiology studies organized on disks so that Jay could view them. Given the detail Jay recited about my case, I have to assume that my own oncologist keeps fantastic and detailed notes. 

I forgot to ask my oncologist for my CEA number last week (the blood number that I track to get some indication of how the treatments are working). So, I said to Jay, "I think that my numbers look pretty good. Do you want to look at the trend?"

Then, while he was accessing the trends, looking at the screen, he said, "Your CEA looks good at 1.6." 

Now, I never saw his eyes move from the screen, and I tried to keep a poker face, but he was paying close enough attention to my body language to then say, "You didn't know that, did you?"

I was very impressed.

Jay asked questions about how I am handling the current chemo treatments, both physically and emotionally, and did a quick physical exam. Then we had a conversation.

Jay was direct with me, and optimistic without sugarcoating things. He can talk in decision tress, which is how I think, so communication felt easy. Here is the basic bottom line, as he described it, or at least, how I heard it:

"Blood numbers look good, so it is possible, unlikely but anything is possible, so it is possible that all the cancer cells are gone. (BTW, I LOVED that he entertained that possibility at all. Loved it.) If that is the case, you are doing chemo needlessly.

Or, there could be some cancer cells in there that we can't see, hiding out. If so, you could continue to do chemo and try to knock those out.

Or you can take a break, let your body recover from chemo, and we could monitor you every two months. There were two studies done, basically showing that longevity is not impacted by a break like this, and overall quality of life is better.

Or, you could spread out the treatments to every three weeks, but I wouldn't recommend that, because we don't know if that is as effective as every two weeks (my current regimen). So you might get all the side effects of chemo with questionable benefit."

He did mention that I should get PET CTs more often than I am, and I take total blame for that. My oncologist also recommends them more frequently, but I have no more accessible veins in my arm and only have one or two accessible veins in my hand, so I'm very protective of those. Plus I hate getting all the radiation from that test.

So, here is my plan:

I will do chemo this week. 

I will schedule a PET CT asap

Then, based on the results, take it from there.

Wish me luck! And a good chemo week. And most if all, thank you for hanging in there with me.

Two other quick notes. 

1. Here is an article I wrote about treating cancer as a chronic condition:

http://commonhealth.wbur.org/2011/01/chemotherapy-for-life/

Feel free to write comments there, even under a pseudonym or anonymously. It helps the owners of this blog, and it is interesting to me to read them as well. :-)

2. I'll close with this story: Last weekend, Tiron really wanted to have our caricatures done by this one artist guy. We don't know him at all (other than his work) and he knows nothing about my health. 

On the drawing, above my head, he wrote, "Don't Stop Believing." I know that it is from Journey, but I took it to heart.

Thank you for continuing to believe.

Love, Marie