Part of the problem I have always had is when do you stop? 18? 21? 30? I know it's a personal question, but what if whatever age I choose isn't the right one for them and they go through another version of the loss of the mother again? Personally the number that always comes to mind is 60. That way they are at a point when they would already be getting adjusting to the idea of losing a parent, and they would have quite a collection of cards that they could reread. The downfall is this is a major undertaking when my kids are only 2 & 4 years old.
One thing I feel silly for never thinking of myself is the fact that I could live and be around to reread what I write to them over the years. Someone at Gilda's pointed this out and it seems so simple and obvious. I liked it.
Back in the day before I had cancer I used to watch a show on Showtime called "the Big C." It's about a middle aged woman, wth a husband, and teenage son who is diagnosed with terminal melanoma (skin cancer.) It takes place in Minneapolis and I loved seeing and hearing about some of my old favorite stomping grounds (I really miss that place!). In the first season one of the ways she deals with her diagnosis is by buying gifts for her son's future birthdays. She even gets him a cherry red convertible for his 16th birthday. She hides all the gifts in a storage locker, but he eventually stumbles across the key and gifts. He doesn't appreciate all the work and thoughtfulness of her gift and doesn't understand why he can't have the gifts now.
I know I have little people who are less likely to stumble across gifts, but I always have questions such as how do I know what's going to be appropriate for these little people in the future? If I make a DVD for them, are they going to have to resort to some archaic form of technology in 10 years to watch it? If I find a thoughtful and meaningful necklace to tuck away for Ella, what do I get E. How do I know what to write? Of course it should be from the heart, but if you only had one chance to write congrats on graduating high school or college would you know what to write?
All of it seems very daunting to me.
Then yesterday after my scan I decided to do a little Christmas shopping. I was in a line waiting to check out when I saw a card that reminded me of Ella. There was a flowery graphic of the silhouette of a little girl running with rain boots, a headband, and butterfly wings. The words on the outside of the card said "Nature never repeats herself, and the possibilities of one human soul will never be found in another." -Elizabeth Cady Stanton The inside reads "Celebrating the one and only you. Happy birthday." I loved it. Next thing I know I'd found a card I loved for E too and then a few more. Next thing I knew I had a small stash.
Then I finally got to the checkout and I found a couple more little pop-up cards that I loved. I decided that the hunt for and challenge of finding cards for the kids, Geoff, family, and even a few friends was appealing, so I bought them. I'll stash them in a box and write in them when I feel inspired. In the meantime I'll enjoy the challenge of finding and making the coolest cards to give for the next 50 some years and hope I get to be around to reflect on all the silly sentimental notes I write.
Today was a snow day so school and daycare were cancelled. This meant the kiddos were going to chemo with us. At first I was a little panicked because not only was I getting scan results today, but I was also doing my music video, and it was a long chemo day. It was going to be a lot for all of us. Fortunately though some amazing anonymous person sent us a package yesterday filled with things "for when your mom isn't dealing well." I keep a bag packed and stashed in case we I ever get sick and we need to go in suddenly, so I updated the bag with a few things from the package and added in some holiday Classic DVDs such as Charlie Brown Christmad, Frosty, Rudolph, etc. and away we went.
In addition to the really thoughtful "sick day package" I also received a package from a school friend yesterday with "Believe" socks, a "Believe" book full of beautiful affirmations/quotes, and a few other things (including an awesome car magnet!). I immediately read the book from cover to cover yesterday, but this morning I pulled it out and reread some of the affirmations and put on the socks. It felt like the timing on those packages had to do with fate. I can't tell you how much some socks helped to ease scan-xiety and help keep things in perspective.
Finally we headed out. We were fashionably late as usual which was frustrating because we trying to match our timing up with timing of multiple nurses and MDs for the video. When I finally got to my oncology/chemo clinic appointment we decided to forgo waiting for the MD to get my results right away and we headed back upstairs to the chemo area to start working on the video.
It was fun. I can't dance, but I gave it heart anyway. There was suddenly a lot of people who mean an awful lot to me there. We danced and giggled and hugged. Ella scowled at us and E waffled about whether he wanted to make a dork of himself with us. It was great!
Finally it was time for results so Geoff, the kids, one of my oncologists, and my lovely NP all shuffled into a little room to talk. The kids tried to be good, but we didn't really explain what was going on well to them and I was tired and not as patient as I would like to be so they chose that moment to start to fight and act out. Geoff tried to keep them occupied so I could at least discuss the results, but as usual our wonderful NP saved the day by taking the kiddos for a "walk." On this walk they found our favorite social worker who then ended up with the kids so our NP could rejoin the pow-wow.
So the results were mixed. Essentially this means that all the tumors we have seen before have greatly decreased in size/metabolic activity. Great right? I think so! The downfall is that there are a few new tumors we haven't seen before in my pelvis and one (?) in my right neck.
What does all this mean?
1. Best case scenario...my last scan was in August. This is more than three months ago (normal period for scans), and I delayed treatment for surf camp. During this time things may have been growing. New things, such as these new tumors. This would explain why we haven't seen them before. The down side of this theory is why haven't they responded as well as the other tumors.
2. The dark horse theory...it's highly unlikely, like less than 1%, but still possible...the chemo worked for some of the growths! but not the others, such as these new ones. Apparently it doesn't happen often, but it does happen.
3. Worst case scenario...I've hit my peak with this treatment and the cancer has become resistant. If we would have scanned a few weeks ago we would have seen even better results and now stuff is growing again. There were down sides to this theory too, but is can't remember them exactly.
Overall, the best indicators are my gut feeling and how I have felt. I can really waffle about things at times, like if you remember when I was trying to decide treatment regimens I had a really hard time deciding, but I immediately felt option number one is the right one here. I felt really crummy and "cancer symptomatic" around and after surf camp. I wanted to start chemo so the pain, crazy night sweats, and uncontrolled weight loss (I love losing weight any other way) would stop.
I asked if the nodule in my right neck is near my port because I can't feel an enlarged lymph node there, I never could, but I had cancer pain there since before my port was placed. I still have a little there but it is much less, so that made sense to me. Same with my pelvis. For me, number one makes the most sense. I'm considering #s 2 and 3 too, but I'm stuck on 1.
We talked about options. Everyone was in agreement that I should stay on one of the chemo meds, Avastin for the rest of the treatment plan. The other chemo med on the other hand, the oncologist wanted to discuss me dropping due to side effects. The neuropathy (numbness and tingling) in my feet is bad. According to my oncologist/NP it can be permanent and even lead to a wheelchair. I understand the risks, but personally living is more important to walking. I promised to let everyone know if it gets worse again, and Geoff threatened to tell on me if I don't.
The rest of the plan is that I will follow up with another scan in two months instead of three to reevaluate. This seems like a good idea to me. Actually it is exactly what I wanted.
I never thought the results would be an all clear, so I'm happy with the results of today's scan. It gives me hope and worst case scenario it gives me more time. In the meantime Geoff and I want to continue to clean up our diets, work in some time to exercise, take better care of ourselves, and most importantly get good sleep. Geoff needs to spend his time job hunting and sleeping so he can function better for all of us because he has too much on his shoulders already. I'll spend my time finishing up school and trying to figure out what to write on all these cards that I'll be hunting for and making. Hopefully I'll be around for decades to reread and reflect on all the silly things I wrote in them.
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