Thursday, January 20, 2011

Chemo on hold!

Thank you so much for your support, your positive thoughts and your prayers. I feel like you have really carried me along this path.

I'm kind of stunned to share this good news and almost don't believe it. Last week, I had a PET CT and got the results on Tuesday -- there is no evidence of disease. There is a small amount of activity on the PET but nothing on the CT.

It is kind of weird to be in this position, in a good way.

We talked with the doctor about options: Continuing chemo, modifying my chemo regimen, and taking a break (I like to think of it as quitting altogether) were among the choices, and I chose Door #3 (ha ha) -- I decided to stop chemo. They will monitor my blood levels in a month, and I get another PET CT in two months. 

So that means, two months with no chemo. Since I have chemo every other week, that is four whole weeks that I regain in my life.

I'm relieved in so many ways, but mostly, I truly can't believe and process my test results. It really does feel like a miracle.

So, I'm trying to keep a steady breath, and remain really thankful and really hopeful. I'm not looking too far into the future, but for me, two months is long-term planning anyway. This whole thing really does force one to be in the moment.

In the meantime, my goal is to regain my strength and continue anything healthy. Thank you for ALL you have done to help get to this point.

If you want to read further, I'll share the story of the PET CT:

I went in for my PET CT on Tuesday of last week. In this test, they inject a radioactive substance into your veins. In the past, Nurse Barbara would insist she could stick me, and stick me she would -- a few times, always unsuccessfully, before then getting Nurse Virginia, who actually could access a vein. 

This time, Angel Chemo Nurse Julie suggested that I use my power port (a device implanted in my chest). Why no one suggested that before, who knows? Anyway, Nurse Julie accessed the port just before my test and I made my way to the PET CT area of the hospital. It was funky to walk outside with tubes hanging out of my chest, but not bad.

When I walked into the nurses' office there, Nurse Barbara's face fell. I immediately told her -- I'm already accessed! I swear, she cheered. (She's truly a nice person when she isn't poking me with needles.)

I got the injection, drank the drink, and then laid on the table for the (20? 40? minute) test. After the test, I got a whole new nurse - Let's call her "Nurse Unnamed" -- whose job was to disconnect the needle from my chest.

Nurse Unnamed insisted on two separate ways of confirming that I had a power port in my chest. I tried to tell her that I had it placed at this hospital, she could look in the system. She did, but wanted more verification. 

Now, for anyone who doesn't know, I can actually remove the needle from the port myself, at home. I even did it once! That basically demonstrates that it isn't complicated. But she kept refusing to disconnect me. She finally left me alone, I assume to see if she could figure out an alternative she was comfortable with.

While she was gone, I looked down at my body. I generally don't have body issues. I never thought I was too thin or too fat, never had issues with my boobs or butt, mostly felt like my body, and everyone else's, seemed to be just fine. Even with all my surgeries, I still didn't really dislike my body.

But right then, I was noticing my body in a new way. Because I can't wear my bra for the test, I didn't have my prosthesis on. I could see my ostomy bag and my port. So, some parts missing, and some parts added. I saw my scars from my surgeries: my mastectomy, my hernia surgery, my initial colon resection, the removal of a tumor from two summers ago, the original ostomy placement, the closed holes where the tubes were, the vertical scar on my belly from my most recent surgery. Typically, I think of them as a road map of my life. Right now, though, there just seemed to be an awful lot of them.

When did my body get like this? How did it get to this point? I was suddenly tired of everyone accessing my body in so many different ways, through cuts and needles and everything else I've done just to stay alive over the past five years. Sitting in that hospital room, along with so many others who were in chairs, on beds and in wheelchairs, waiting for treatment, I felt like a victim. And I hated it.

I decided that I needed to take back some power. So, I looked at my options. I could remove this myself. Or I could return to the infusion unit and ask them to remove it. Nurse Unnamed did not have to do something that she made her uncomfortable, and I would not be at her mercy.

Ironically, once I acted like I had options, she decided to go ahead and do it. Out of all the stressful elements of the test, I didn't expect the disconnect to be the most hassle. But it was manageable. 

So hopefully, I can remember that, even in situations that don't feel great, there are options, and I have choices. Right now, I'm happy to have the choice to take a "chemo holiday" and hope it is a good, long one. Thank you again for all you have done to help me get to now, and for always believing that this is possible. That belief really expands my world.

Have a most excellent day.

Much love to you,

Monday, January 3, 2011

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:

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