Wednesday, February 27, 2008

Live Like you were Dying

So, I finished the e-mail, got in my car, and the song that was playing, right at the start, was Live Like you were Dying by Tim McGraw.

At first I took it as a message -- like, uh oh, am I truly dying? Is this the beginning of that?

Then I remembered what we talked about last night, where at first, I was doing all the things and working toward being all the things that I really wanted to do and be, but then I returned to my "old life and old self" and that was bothering me. Thinking about this, I decided to interpret my hearing that song from a slightly different angle, to get a different message, that this can be viewed as a gift (sort of like what Kerry was talking about) and this song was a reminder to do that.

For anyone who doesn't know the song (it is a country song), the lyrics are below. The really funny part is that I identified with the lyrics in at the start of the song ("I was in my early forties") and now realized that perhaps, I only think that I am in my early 40s!

Off to acupuncture.

Love, Me

He said I was in my early forties
with a lot of life before me
when a moment came that stopped me on a dime
and I spent most of the next days
looking at the x-rays
Talking bout the options
and talking bout sweet time
I asked him when it sank in
that this might really be the real end
hows it hit you when you get that kinda news
man whatd you do

and he said
I went sky diving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named fumanchu
and I loved deeper and I spoke sweeter
and I gave forgiveness Id been denying
and he said someday I hope you get the chance
to live like you were dying.

He said I was finally the husband
that most the time I wasnt
and I became a friend a friend would like to have
and all the sudden going fishin
wasnt such an imposition
and I went three times that year I lost my dad
well I finally read the good book
and I took a good long hard look
at what Id do if I could do it all again

and then
I went sky diving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named fumanchu
and I loved deeper and I spoke sweeter
and I gave forgiveness Id been denying
and he said someday I hope you get the chance
to live like you were dying.

Like tomorrow was a gift and you got eternity to think about
whatd you do with it what did you do with it
what did I do with it
what would I do with it?

Sky diving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named fumanchu
and then I loved deeper and I spoke sweeter
and I watched an eagle as it was flying
and he said someday I hope you get the chance
to live like you were dying.
To live like you were dying
To live like you were dying
To live like you were dying
To live like you were dying

Another colonoscopy

For the first time ever, I found blood in my stools. Yikes. I didn't even catch this before having cancer. And now, there it is, undeniably.

Reluctantly, I told the doctors, who ordered a colonoscopy. Of course.

I was originally told that they only needed to look in the lower colon, not a full colonoscopy. BUT, today, I was informed that it would indeed be a full colonscopy.

I freaked out.

I don't know what it is. The fact that everything is so out of my control? That people are poking and prodding at me all the time? That I just had enough? And the woman booking the appointment just couldn't understand my need to understand more about the procedure, what the doctor was like, etc. And I just felt like life sucked. I rarely feel like all of life sucks, so that in itself sucked. And down the vortex I went, into the ocean's drain with all those frigging plastic bottles and flotsom and jetsom that will just never go away.

They wanted to postpone my chemo to do the colonoscopy and all I could think of was that Tania and Eleanor and maybe Kerry would be coming with me to chemo this week and I didn't want to reschedule it, and also because the end was in sight. So she agreed to squeeze me into Friday's schedule so that I didn't have to change my chemo day.

After all that, just before the procedure, I burst into tears and was crying and dreading the IV and unconsciousness when I heard Stephanie's voice saying, "IVF nap" which cracked me up while I was crying and maybe made me look like a crazy lady but I felt better.

So thanks for meeting and the bright spots that carry into today. And thank you so so much for listening and being there.

Love, Marie

Wednesday, February 20, 2008

Chemo Five of SIX: Blood counts coming up, beginning to think about radiation

I finally got the schedule for the rest of my chemo, and on Tuesday, had number five of six. So I am almost through the first part of this treatment!!!!

The past two weeks have been relatively non-eventful, though I did learn a few things.

The first that comes to mind: I got my regular injection to increase my white cell production. I usually have a particular nurse who does reiki before, during and after the injection, so it never felt like a big deal to get the shot.

This time, she was out, so I got the nearest available nurse. Wow. Not only did the injection hurt like heck, but I let out with a string of swear words that I don't think I've ever used all in a row, then burst into tears. So, thank goodness for reiki and, I am learning that while I am living with so much uncertainty, it helps me to have consistent caregivers.

Now that my doctor will be going on maternity leave, I will be assigned to another doctor. Learning that I need consistent caregivers, we opted to keep my current chemo day. This way, I would have the same nursing staff, scheduling person, etc. We'll figure out what doctor is available on that day. The other good news is that the resident who I adored at Dana Farber is now a Fellow at MGH, so I will have him on my team as well. Ya-Hoo! Someone is really watching out for me.

I seem to be tolerating the treatments well. My white cells were in a good place this time, and, thanks to the seaweed soup, the bone marrow soup, the somewhat consistent iron pills (I don't always take them -- oops), cream of wheat, lamb, cooking in cast iron, acupuncture and a little bit of magic...I now have what seems to be a relatively normal set of red cells. Whew. My nausea is mostly the kind of nausea that makes you feel like you should put a little something in your stomach, so I'm eating constantly and steadily gaining weight.

This chemo visit was a bit funky but kind of fun (in a weird way). My schedule got all balled up, so I was there all day. But I got to visit with other friends who were there as patients, and a few friends dropped by here and there, as well as my husband. I learned about a fabulous knitting book, and I almost finished knitting my scarf for my four-year-old son.

It did occur to me that all of us chemo patients spend alot of time just waiting. Isn't it ironic that, for people who I am sure have contemplated the precious commodity of time, we are forced to sit and do nothing with it! I've chosen to look at it as an investment -- this full day in the hospital buys more time on the other end. But still, ironic. And a bit annoying.

Next up is radiation. Here is what I know so far about that:
-- It kind of scares me (which means I need to learn more).
-- Because my cancer was right on the line between colon and rectal (lovely), it is my choice whether or not to have it. All advice points to having it, so I am going down that road.
-- It is five days a week for 5.5 weeks, and I will wear my continuous chemo pump during those five days, every week. I really resent having this pump, but I've got to find a way to make peace with that or I will make myself crazy. Someone at my acupuncturist office told me to think of it as a friend that is mildly annoying. I don't really have any of those, so I'll have to conjure something up. Any ideas are welcome.

I meet with the radiologist on Monday to learn more, so if you know of any questions I should ask him, send those along.

Finally, the kids seem to be doing okay with all this. I am away alot, and the more I am away, the more they seem to cling to me. Between the doctor appointments, acupuncture, nutritionist, yoga, phone calls to schedule appointments, and also needing some time alone and with friends (haven't figured out how to get exercise in there, too), I think I would see them more if I had a fulltime job.

It helps that folks have provided great playdates (thank you!) and we've found some wonderful babysitters along the way.

There was a time period where I was so raw that I was wide open. And during that time, it is almost as if grace had a chance to enter. The gifts and suggestions that I was open to during that time have all been wonderful additions to my life. Life has now kind of assumed a new normal, so I am no longer in that place, and while I wish I could generate that kind of openness in myself, I am always grateful for ever having it at all, and for all the gifts it brought.

Thank you for all the meals, playdates, suggestions, good wishes, prayers and friendship. This feels like such a long road, and I am so thankful for your company.

Love, Marie

Tuesday, February 12, 2008

Livingston Taylor makes my day!

I am kind of star-struck so I have to share this with you guys!

Livingston Taylor was at my father-in-law's birthday party. I got to talk with him and tried not to act too star-struck. Then he sat down and played the piano and sang to my husband and me. No one else came over to listen, so it felt like a personal concert. I just loved that!

Saturday, February 9, 2008

Mammogram results good, and removed the pump MYSELF!

Before Chemo

Once again, I'm headed to chemo filled with awe and gratitude for the support you show in so many ways. Thank you so sincerely. This can be such an isolating experience and you make it feel so much less so.

This week has been so good that my last chemo feels like ages ago. I'm loving that.

Well, it was a relatively uneventful week, other than the Pats losing, but hey, what a great streak and great team, and besides, being from Pittsburgh, I'm probably still a Steelers fan at heart.

Two significant events that I wanted to share.

First, my mammogram and exam showed no signs of cancer. Whew. I can't believe what a huge weight that is off my mind. Before that, I was going into planning mode for how I would manage two cancers at once. But, once I got rid of that worry, I found that I had alot more energy. I guess I was expending alot of energy just thinking about that. It was great to see my breast surgeon and catch up with her as well. She is truly an angel on earth.

Second, many of you know my little routine: chemo on Tuesday, get the continuous infusion pump, wear it until Thursday, then have it removed.

I've either gone to see my husband at work to have it removed, or gone to MGH to have it removed. But I am actually supposed to be able to do this at home myself. The idea of doing that kind of freaked me out, so, I decided to just drive to MGH and have them do it. I felt a bit lazy and a little bit like I wasn't stepping up to the challenge. If everyone else does it, I should be able to, too. But I stuck with my routine.

To make a long story short, on Thursday, my car wouldn't start and, once we jumped it, wouldn't stay running. By the time I waited for the tow truck, it was too late to call a cab so I HAD to remove the pump myself. No choice. Sometimes those messages from the Universe are more direct than others.

I laid everything out on the bathroom floor, all around me:
- Saline syringe to clear the line
- Heparin syringe to keep the blood from clotting
- Sharps container to dispose of the syringes
- Rubber gloves to protect my skin from any chemo that might leak out -- yikes
- Plastic bags to hold the tubing and infusion machine after I remove it
- the FedEx box to return the machine

I had my nurse on speakerphone giving me instructions and walking me through it, and the kids with a babysitter two floors away because I didn't want them to be anywhere near this.

I got through it with no spills and without throwing up. I was really proud of myself for doing it, and afterward, decided that I will continue to go to the hospital to have it done. It just gives me some emotional distance from all this.

Oh, and they never could find a problem with the car, and it seems to start fine now.

It was great to have a relatively uneventful week. I'll write a bit more after chemo. Whenever I go in for chemo, I feel like a lightweight fighter going into the ring against a heavyweight champ, with only my attitude to help. Kind of like, I know I am going to get pummeled, but I'll give it my best shot and see how it goes.

After Chemo

My blood counts were a mix of good and low. I don't mind so much -- it's asking alot of my body to rebuild itself from chemo over and over. They were good enough that I had chemo on Tuesday. It was relatively uneventful, and nice to have a few visitors while I was there. Coincidentally, one is a friend who is a fellow patient. It's more fun to meet at a good restaurant, but still nice to have friends around.

Wed and Thursday, I wore the pump. Not fun, but it is getting to be routine.

Neuropathy is back, but not horrible this week. (knock wood) Taste buds are definitely affected: Chocolate is tasting gross now.

On Friday, I got my shot to increase my white blood count. I don't know why that part is so traumatic for me, but it is. This time, I didn't have my regular nurse, which throws me off. She was out, and the one I got was a pretty impersonal kind of guy. After I left the office, I knew I couldn't drive so took a nap in the healing garden (this little indoor garden they have) then went home and slept for the rest of the day. I get bummed out that I am missing out on general day-to-day life when I need to sleep, but at least I have the luxury of being able to do that.

That's it for now. Thank you for listening!

Oh, I'll pass along something I heard this week: I hope that every day, you can laugh, cry (or otherwise emote!) and think.

Love, Marie