Birthday card

This past week at Gilda's we stumbled on the topic of leaving birthday cards, graduation cards, prom cards, etc. for your kids. One person actually called the notion of it all courageous, and frankly, I agree. I've pondered doing some variation for a long time, and I've even talked with Geoff about it, but his advice has always been "if you aren't comfortable with it, then don't do it." This seemed like good advice so I've always gone with it.

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.

Big Day

So today was my scan. It went as well as scans go, but I know nothing about the results. Usually I get the results the same day, but it didn't work out this time unless I wanted to wait until next week for my scan and that didn't have appeal to me. Sooo, I'll find out in the morning.

It was the first time I've even driven myself to and from a scan, which was fine, but I did miss Geoff. It was a big day for us, because it was Geoff's last day at work. Just like my scan results, we don't know exactly what is next, but we will find out soon enough.

As always I'll keep you posted as we get answers...

Scan-xiety

A few weeks ago I took a class at Gilda's House on Scan-xiety...the anxiety one gets related to their next scan.

This may seem silly to someone who has never experienced scan-xiety, or had cancer, but talk to most anyone that has had cancer, and has to do routine scans, and they can usually relate. It's one of those reasons people go to Gilda's House. As I try to explain scan-xiety here I realize how silly it may seem to someone outside of the cancer world, yet if I talk about having an upcoming scan at Gilda's it is inevitable that others will ask "and how are you feeling about it?" or comment "I bet you can't wait to have it over with..."

It's hard because these scans are just scans. They don't actually change how I live today from how I live tomorrow (well, in general), but they hold a lot of power. Ok, actually, we give them a lot of power.

I wouldn't say I really learned much that was new in the scan-xiety class, but it was helpful in redirecting and refocusing my mind. It was a good reminder to live in the present moment and to remember that no matter what happens, I'm alive right now and that is worth being thankful for.

I'm not sure if it is the class or the fact that it's the holiday season and I'm so busy, but I have a scan on Thursday that I'm really not stressed about. I wouldn't say I'm looking forward to it, but I'm also not dreading it.

I guess a part of my lack of anxiety is the fact that I think I'm doing pretty well right now. I mean I feel really crummy from chemo symptoms still, and I really hate that, but as far as cancer I feel pretty well.

I usually try not to talk too much or too specifically about my "cancer symptoms" because I'm a little superstitious. Before my last scan I could feel enlarged lymph nodes in my neck. I was having horrible night sweats and I was loosing weight no matter what I ate. I had pain in my sides (where other lymph nodes are located) that felt like a baby alligator was chewing away, so I was popping pain pills on a schedule and it still didn't take all the pain away.

At the risk of being completely wrong, I think I may actually have a pretty good scan this week, but who knows. I'm fairly good at telling when it's really bad, but I can't say that I can predict it all. All I can say, is that right now my pain is mostly bone pain from chemo. My sweats are hot flashes. I can't feel any enlarged lymph nodes, and much to my dismay (and happiness) I'm gaining weight (which I'm not supposed to loose...talk about a double edged sword).

Personally, I'm hoping for a Christmas miracle.

To be completely honest though, I am scared. Last time I had a mid-chemo scan it was really good and then the chemo stopped working. That's one of my biggest fears right now. I'm terrified I'll have a good scan and then in a few months I'll have another horrible one...This is where scan-xiety comes from. The reality though is that I just have to keep reminding myself that I'm doing ok today.

I'm here today and it's looking good for tomorrow.

This is probably the most important reminder for myself today as we received news that one of our Gilda's friends passed away over the weekend. She was barely older than me and last time I saw her she looked really good. She is mother and a wife and I keep thinking about her family and what Christmas will be like for them.

Geoff actually got the news first and told me when I came home from work tonight. We both cried and hugged each other extra tight. He followed me around the house trying to dispel all the similarities I was quietly finding in my head. Honestly though, I'm not sure which of us was harder hit by the news. Geoff was friends with her husband and usually related to him better than anyone else at Gilda's.

I've had occasional thoughts before today about what would happen if something changed before Christmas for us, as in what if I took a turn for the worst. Usually I shut the thoughts down as quickly as they start because I just can't afford to think that way. I always tell myself I'm here now, enjoy it. So that's what we did...

We are blessed and received a huge package of Christmas presents for our kiddos today from strangers. We were overwhelmed by their thoughtfulness and generosity. We put some of the presents under the tree and um, hid some others...and then we took one for each of the kids and talked to them about how lucky we are and how giving others are, then we let them each have one early present.

Of course the kids thought they were the lucky ones, but really it was us. We were in a position to really appreciate all the magic of Christmas at that moment. This way no matter what happens I got to have a little bit of Christmas with the kiddos already and you can bet that I'll be thinking about those memories while I lay in that noisy scanner on Thursday. Take that scan-xiety!

Worst mom ever

It's been awhile, again, since I've written.

I think about it everyday, but often I don't have the time to write what I want to say.

Not to mention that even though I try to be as open as possible so I can share the "whole cancer experience" there are many things that happen in our lives that it isn't my place to share. Lately, there has been a lot of ups and downs, but none of them are mine to share so it's been harder to know what to write about.

I've been busy trying to juggle our already too busy lives with all the holidays have to offer. Last year I had time off after my surgery to relax and really enjoy the holidays and this year it seems to be the polar opposite...Everything is going way too fast.

I really wish I could just hit pause for a night or two.

In addition to everything else I'm under pressure with school work. I've finished all my big classes, but I still have clinical papers to write. Speaking of which, I have a big one due by the end of this week, or else! I have a bunch of little papers for school to do too and I haven't even given all my preceptors my schedule for December and it's December 10th.

The biggest problem with doing my schedule right now is that I feel crummy. I feel like I'm walking a fine line and I'm trying so hard to protect my immune system. I'm tired and I have a sore throat and cough that just don't seem to be going away. Yesterday I slept the entire day. Yes, the ENTIRE day and I still feel crummy. One of my biggest fears is getting pneumonia.

I've been a major sissy and tried to stay inside as much as possible, but seriously it's negative temperatures with the wind chill right now so I think it's pretty much justified.

On Sunday, Geoff and I had the opportunity to go to a Packer game for free with my Dad (my mom was staying home to babysit). We were both really excited to go, except for the cold. I haven't gone in a long time and Geoff hasn't ever gone so I was really excited to go with him...at the same time I kept thinking about how miserable it was going to make me feel for days afterward. In the end, I bailed at the last minute. I realized it was much more important to protect myself so I could go to many more games in the future, than to risk everything to go to one game.

I stayed at my parent's house with my mom and the kiddos and actually, we went out Christmas shopping (which is really pointless when you have two little kiddos with you). All in all though it was a good day for everyone. Sunday night we were reluctantly packing up to leave my parent's house when I accidentally closed Ella's fingers in the screen door.

At first I didn't realize it, then I saw where she was standing and realized what I must have done. Then I saw the look on her face...that moment before the blood-curling scream comes. I was already opening the door and trying to rescue her, but then the scream came and I completely lost it. I don't care that I'm a nurse. None of what I've seen professionally (btw, I used to be a trauma nurse) prepared me for my own baby being hurt and bleeding...I know, I know...We've all had our fingers smashed in the door at some point or another, but it doesn't matter when you have vowed to do everything you can to protect your babies and you are the one that hurts them.

So, I completely lost it.

In the end Ella lost a good chunk of skin to her right middle finger. She also has a nice sized hematoma (bruise) under the fingernail (she will most likely loose her fingernail). It bled like crazy and she screamed for a good half hour straight. There was discussion, no make that, frantic yelling about whether she needed an ED visit, but in the end we decided to wait until we were home.

The next day I took her to the pediatrician's office. She was able to bend it and straighten it so it seemed like it was going to be nothing, but as luck would have it, the xrays found that she has a "tuft fracture." Now she is wearing a splint and will need to follow up with pediatric ortho and it's my fault.

I feel terrible. Worse yet though was what was yet to come...Daily dressing changes with a fearful, irrational two year old. 

As I tried to reason with her and was barraged by million "whys" from her and E. I finally jokingly said something to the effect of "come on Ella. We need to change your dressing so your finger will get better and not fall off."

I should have known better.

This is what followed...

E: "ya, Ella. (pause). If your finger falls off we will have to get a new baby and since Mommy is out of babies, then we will have to find some other parents that have a Mommy with a baby in her tummy and pay to get that baby instead."

um, what? Pretty sure I stopped breathing at that point and didn't know whether to laugh or cry. What have I done? or not done? There are so many things wrong with that statement...like disposing of Ella or buying a new baby or...wow!

On the bright side, I realized that closing Ella's fingers in the door wasn't actually what made me the worst mom ever...