CT scan shows tumors shrinking and other answers to prayer

Thank you for your prayers today, and all the power of the FB prayers as well (and thank you for keeping me anonymous!). They definitely did something because...

1. for the first time in recent memory, I did not vomit during chemo and

2. though I was wheeled out of the hospital, I am currently, actually able to be sitting up on our sofa. 

And, your prayers directed toward a good CT scan made an impact - both my tumors are smaller, with no new ones showing, either! I was bracing myself for any news and very happy to hear that. Thank you for all the energy you sent that helps to shrink these. I do believe that our energies can work together to make something happen, both intended and unintended.

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Other news: On January 30 at 5:30, I will participate in a panel discussion following a short film called Outside In. The film is about a woman who was diagnosed with advanced cancer and not given long to live. It is now 10 years later - she will be there, too. Her journey is quite interesting!

 http://commonhealth.wbur.org/2012/01/commonhealth-meet-up-outside-in/

The event will start at 5:30 at WBUR on Monday, January 30. It’s free, but seats are limited. Please RSVP to events@wbur.org.

It would be wonderful to see you if you can make it.

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Now, for another miracle story. I can't remember if I shared this with you went it happened. It felt so surreal that I wasn't sure how to to talk about it.

Today, between appointments at Dana Farber, I wanted to download some songs onto my iPhone. I couldn't get anything to download, so I asked my techie husband to help me either do that or help me to find the songs that were already on there. 

"There are no songs on there," he said, looking through my phone. "Not even one."

I typically use my phone for calling, texting, doing email and taking fuzzy photos.  But I knew I listened to music on it once before, and I decided that that music had to be on here.

So - I reminded my husband of a particularly challenging week in the summer. I was lined up to have this big surgery, kept getting hospitalized, and had unexplained bleeding.  I prayed to God to thank Him for His presence but I could use a little reminder that He is there. And I went to get an ultrasound, followed immediately by a visit to a gynecologist. The sign in their office said no cell phones, so I turned my off.

Leaving the doctor's office, i took my cellphone out of my purse, turned it on and put the earpiece in my ear. I heard voices in the earpiece, and assumed it was just interference. I fished in my purse for my keys, zipped up my handbag, and then repositioned the earpiece for my walk to the car. I intended to make a couple of phone calls.

But the chatter was still there, and when I stopped to listen, more closely, I heard James Taylor's You've Got a Friend. Well, that was interesting. I looked at my phone - nothing was playing or accidentally hit. I looked at the music list - nothing there. Well, the song was making me feel good so I stood there and listened through to the end. That was nice. Then, before I could even move to make my phone call, another song came on, equally as engaging and feel-good.

After this second song, I walked to the car, listening to the third. I sat in the car, still listening, and decided to drive home. I continued to listen the entire way to what appeared to be a playlist made just for me.

No one was home when I arrived, so I relaxed on the sofa and continued listening. The "busy" piece of me wondered when this would end. But I knew that I couldn't recreate it, so I stayed. And sure enough, after exactly one hour of play, the music stopped. 

I walked around feeling slightly puzzled and mostly blessed. I figured that Tiron could solve it. I didn't want him to burst my bubble, but the scientific side of me wondered how this playlist might happen. He couldn't figure it out, and I haven't downloaded tunes since.

Until today. I really wanted to listen to music. But it wouldn't download, and my husband confirmed that none were there.

I feel like I got that little miracle when I need it, and the reminder when I needed it.

This is one of the many reasons that I believe in the power of prayer, and that simple miracles appear when we need them. I am still awe-struck by this, and, it makes me happy. And I want you to know that these kinds of things are possible.

Love to you,

Marie

Thank you and Palliative Care Conference

THANK YOU for your positive thoughts and prayers. They have made a HUGE difference this week! I was able to get out of bed and even eat and get out a little every day. I am so amazed at the power of everyone together and I want you to know about the impact it has. It is amazing.

On another note, I attended a palliative care conference last week. The experience was enlightening for me. If you are interested in reading about it, the link is here:

http://commonhealth.wbur.org/2011/11/what-do-you-tell-your-children-about-cancer-palliative-care/

I am so grateful for your support through this and in awe of the difference you make.

The glory of friendship is not the outstretched hand, nor the kindly smile, nor the joy of companionship; it is the spiritual inspiration that comes to one when he discovers that someone else believes in him and is willing to trust him.
- Ralph Waldo Emerson

Thank you for your belief in healing. 
Much love to you.
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