Wednesday, February 24, 2010

First chemo session, again

Chemo happened yesterday. I thought I would be pleased to get this underway, but mostly, I feel bummed out.

The folks at MGH are really really nice, and I feel very cared for. It amazes me how "normal" many cancer patients look. If they weren't waiting for a doctor or hooked up to an IV, I would never know that most of them are patients. Of course, there are always patients who arrive in wheelchairs or on stretchers, and I say a little prayer for them, and give heartfelt thanks that I am not in that position.

Your prayers were again so effective: The doctors decided on a chemo and we all felt the plan was reasonable. Thank you for your prayers for that. That conversation was less stressful than I expected! Sometimes they provide info and we need to make the decision on the spot: It is really hard to make those kinds of decisions in the moment, and having them think it through in advance makes it much easier.

This chemo regimen is different than my last. Thankfully, because that last one didn't do the trick! This one is called FOLFORI (pronounced Fol-fury) and typically the first-line drug used in Europe. I kind of like that. They added one other drug to the mix, but I've pushed that name out of my brain, trying to pretend that I am a normal person and not really taking chemo.

They are still waiting for some genetic testing results on my tumor, and once those return, we will add another drug to the regimen. So I guess I started out with "chem lite."

Marilyn, Tiron and I headed to the infusion unit, where I got hooked up to an IV pole and the stuff drips into my veins over about two hours. It is freaky that so many people there remembered me. And I got my old nurse! I was thrilled with that.

This process involves alot of waiting, and the waiting is really hard for me. I feel like, if my time is limited, I don't want to spend it waiting for nothing. But, wait you do. My doctor took two hours before she got around to writing the chemo prescription. Next time, I'll ask her to do it while I am in her office. I forgot that little trick.

We got seats with a fantastic view of Boston, and were apparently the envy of some other patients. One guy complained to his nurse that he didn't have a better seat. Strange to have envy enter that kind of situation, but human nature is everywhere. Or, as my friend the hospice nurse says, "The closer people get to death, the more of their true selves come out."

The chemo was hard on my body, so they had to give me other drugs to counteract that. I watched half of Julie and Julia, which was nice and relaxing and soothing in a weird way. And then it was all done.

I got hooked up to my continuous infusion pump to wear home. This enables me to go home and keep getting chemo while I go about my day. If you see me on some Wednesdays and Thursday mornings, you will see me carrying a bag and perhaps you will hear the whirring of the pump. I try to remain grateful for this invention that lets me go home, rather than spend two days in the hospital, but I have to say, I truly resent it. It gets removed on Thursday, I get a shot on Friday to bump up my white cell count, and the cycle starts again in two weeks.

How many sessions? The bummer is that, this is for the foreseeable future. So, I can't do a count down. The doctor said that the chemo would need to get rid of ALL the cancer cells. She also said it is unlikely to do that. I think of it like killing cockroaches: It just takes one to get that whole colony up and running again. I try to view this like I have a chronic condition, but my head isn't quite there yet.

The good news is, they are willing to run these treatments around the rest of my life. So I can skip sessions to travel, for example, which I couldn't do before.

I'm excited about this, because I think that will help the quality of our family life. I'm also really excited because I want to go to the Hippocrates Health Institute in Florida, and this will enable me to take time off to do that.

The kids have been fantastic. Not that they haven't been scared or worried, but they are really rallying when we need them to. and Tiron is keeping all my medical records straight, when all I want to do is toss them in the trash.

Please keep your prayers coming! I will take any prayers, but someone advised me to be specific, so here it is:
That the chemo kills the cancer cells and is tolerable.
That the boys (including Tiron) grow in inner strength and cheer.

Much love to all of you.

Monday, February 22, 2010

Healing well and chemo soon

Thank you for all your prayers and good thoughts. I am healing amazingly well from my most recent surgery, and I got the staples removed today. Yay! I even walked to Harvard Square and back, a total distance of about 2 miles.

The good news is that they got all the "big" tumor out, with clean margins. Whew. The not great news is that there are more tumor cells in there. Some are attached, some are floating around.

Which up is chemo.

It was clear that I would need to do chemo anyway, but I was kind of hoping that there would be no sign of disease remaining. Oh well.

So.....given how powerful all your prayers and good intentions were for the surgery, I wonder if I can ask you for another round?The doctors need to decide which chemo to use. There are a few options, and I would love it if they picked the right one the first time around. (Obviously, the chemo I did two years ago didn't quite do the trick!)

Thank you for your prayers and good intentions on our behalf!!!! You can be sure that I am sending good vibes back to you.

With love,

Wednesday, February 10, 2010

The power of a large group praying


I am totally humbled by the power of all your prayers, and the prayers you have generated on my behalf. And all the good karma you are putting out there (all you incredibly good-hearted non-prayer people).

I got out of the hospital on Monday and am doing well. In addition to saying thank you for helping me through this, I wanted to share specifically with you how tangible that power is. I feel like I am witness to more than one miracle.

You helped pray for a successful surgery and a smooth recovery.

Last summer, I had a smaller (but still big) surgery. That one involved one surgeon and lasted about 2 1/2 hours, the incision went from belly button to pubic bone and they removed only one body part. After that surgery, I couldn't get out of bed by myself, I could barely walk down a hallway in my house, and I was down for about 8 weeks afterwards. And skinnier than I've been since, well, junior high. Plus, they gave me injections that left my arm completely black and blue.

This time, the surgery was much bigger in every way. This one involved two surgeons and two other doctors; it took 71/2 hours. They removed the same body parts as last summer (I had them rebuilt after that surgery - those obviously didn't last long!), as well as a full hysterectomy and a few other areas where they found tumors. I woke up with a colostomy bag on my left side, more than 25 staples from above my belly button to my pelvis, and a drain on my right side.

BUT, from the first day, I could get out of bed on my own and walk the halls. My spirits were surprisingly good. Even though the news wasn't ideal (that they found more tumor than expected), I really felt a sense of hope and possibility. I got to learn a bit more about the cards I am holding. And this time, there were absolutely no bruises from the injections.

I attribute this totally to the power of your prayers. I am in awe of the tangible, physical differences this made that no one can explain. It is not my attitude; I can't claim credit for that. I was pretty bummed out going into this surgery (little rectal cancer humor there) and not even thinking that there was hope. But I came out of it with hope and more.

I asked that you pray that God guide the hands of the surgeon, and I feel like those prayers were answered and more. One of the surgeons came to speak with me after the surgery, to tell me about why she removed all that she did. She explained that some of the tumors were obvious, and for others, she couldn't see them but just had a feeling that something might be there. In those instances, she removed those parts, and turned out to be right. I feel like something larger was guiding her, and that your prayers that God work through her hands were answered.

You prayed for our little boys, that they come through this, not only stronger, but feeling blessed. The boys did fantastically well. I appreciate everyone's tangible support on that end, from their teachers through their playmates and the parents of their friends. When I returned home to see them, they were taller, yes, but also stronger and more independent in ways that are hard to describe. Totally an answer to our prayers!

Some more signs:

The priest at my church was trying to convince me that the Sacrament of the Sick is about healing. He offered to see me before surgery, but I wanted nothing to do with it. I still think of it that sacrament the same way that I did when I learned about it as a child, as the sacrament of last rites. When I was little, I looked at sacraments like Girl Scout badges, something to work toward and collect. (A type A even then, I hated that the system was set up so that you couldn't actually get ALL of them!)
Anyway, I declined. I wasn't ready to add that one to my list.
In pre-op, they let me use my phone (tee hee) and I was checking messages. A friend wrote me to say that she was going to church to say a special prayer for me. I read that message, looked up, and there was a priest. Holy crow. Freaked me out. He asked if I wanted to receive the Sacrament of the Sick. I felt like, at that point, I wasn't really supposed to refuse. And it turned out to be okay -- I'm still here!

After my surgery, I was assigned to a room with a Sicilian roommate. This was totally comforting to me, seeing the whole extended family march in at the start of the day, and out at the end of the day. Because, of course, Italians move in a family group. And EVERYONE, from the grandparents to the youngest children, go to visit the sick. I can remember doing that as a child. Lying in bed, listening to all the Italian conversation, I felt like I was five years old again at my grandparents' house, and that was cool.

A day or two later, as I walked / shuffled :-) the halls, I heard beautiful singing coming from one room. I peeked in and I couldn't see the patient. He or she was totally surrounded by a crowd of African Americans, standing so close together that their shoulders overlapped. They were singing hymns, and while I couldn't understand the words, the spirit of the songs just lifted me up. I stood there listening and hoped that their friend and relative was being lifted as well, and I gave thanks that they were there.

Thank you for your notes, your help for our family, your thoughts and prayers, your good deeds toward others, your candles. Thank you for the food, for adding me to countless pray lists, and for totally being there.

Though I do feel really good, I am clear that we are not out of the woods yet. The folks at Memorial Sloan Kettering said it directly: There is hope, but both the surgery and the follow-up chemo / radiation treatments need to go 100% right to get rid of this.

So, next up is chemo. I'm supposed to start as soon as possible. Yuck. But gearing up for it. If you want, I'll be back in touch when I know more.

In the meantime, please know what a huge difference you made and continue to make, and that you make miracles happen. And I am totally grateful.

Love, Marie