Ella knows best

Today is Ella's birthday and I want to be celebrating it and enjoying it the way I envisioned. Instead I feel like I'm battling it out with my now two year old. Even as I write this I realize how silly it sounds, but that doesn't make it better.

I'm tired. I'm sore. I hurt everywhere. It's a good thing I'm almost done with chemo bc I feel horrible. I've lost track of how many times I've broke down crying this week bc I can't do all the things I "think" I should be doing.

It's only one little part, but lets just talk about my ankles. More appropriately known as cankles. This happened at the end of chemo last time too, and actually it was worse last time, but that doesn't really make it easier this time. When I get out of bed in the morning and try to stand I feel much like what an elderly person with arthritis must feel like. My ankles don't want to move. They ache and only feel better with the use of pain meds and heat. They are stiff and the pain...I don't even know how to describe the pain. There is a reason elderly people don't have 2 year olds, just walk a few steps in my ankles and you would understand.

There is so much more aches, pains, and discomforts than my ankles, and I won't bore you with all of them. Right now I'm wishing I could sleep for a few days, but I'm lucky if I get 8 hours of sleep in a day. Days! Ha!

Anyway, I had plans for painting projects while the kids napped today. It doesn't matter that I hurt. I take pain meds and suck up the rest. I was able to get E to sleep without a problem, but not Ella of course. She has become adept at climbing out of her crib. Usually this skill is reserved for bedtime, but not today. We've talked about being done with the crib, but we are both hesitant to move her to a bed completely. 

Back to today...I thought I finally had her to sleep. Things were quiet which is either really good or really bad. Today it was really bad. She had stripped herself down and um, wet her bed. As soon as she saw me she demanded to sit on the potty. Not because she actually had to go but bc she wanted a sticker for trying.

So much for painting or cleaning up for her birthday party.

Instead I cleaned her and her bed up and then laid down on the bed in her room. It's the only way to get her to calm down and go to sleep. She just wants someone by her and I can't blame her. It's normal and ultimately, it's sweet.

From an adult perspective, it can be frustrating. Especially when I'm tired and sore and know I have limited energy...and I'm not going to want to get back up. Maybe I shouldn't though. Maybe I should give myself a break. Maybe my sweet (and frustrating) little two year old does know best.

A year later

I don't know why, but I've had it in my head for days that July 26th was the one year anniversary of my diagnosis with the big C. I planned on writing a blog post about it, but I was never exactly sure what I wanted to say.

When I sat down to actually write the post I started to second guess myself and sure enough I was wrong. I was originally diagnosed on July 23, 2012. I know this because I know it was a Monday. I had gone into the clinic on Friday and didn't expect to get results so quickly. When my phone rang and it was my NP's office I knew immediately it wasn't good.

I was just getting ready to assist in a c-section of twins. I was still in training at work, but i was scheduled to be one of the baby's nurses. I took the phone call in the locker room at work. Of course I can remember exactly where I was standing and that horrible feeling like I had just had the wind knocked out of me. Initially, I thought I could pull it together enough to still work. Then, I started thinking about whether I could put my issues aside and be happy for the mom that was about to have surgery.

Again, I thought I could do it. Then I started to think about my own children and the implications of me having cancer. That's when I completely lost it.

Ironically at that time, I had no concept of what was to come in the next couple weeks, much less this next year. I was overwhelmed with the news and overwhelmed that I had to wait over a week to see an oncologist and get any more information.

The one year anniversary of that appointment is next Wednesday, Ella's birthday.

It's amazing to think about all we have been through in this last year. I have no words to verbalize how grateful I am to still be here and on a completely different note, I really have no words to verbalize how excited I am for Ella's second birthday.

As I've mentioned before, the day she was born didn't go the way we had planned and I needed an emergent transfer to a hospital. Then last year, I had my first oncology appointment on her birthday and it was an emotionally distressing day. When I think of my little girl's first birthday I remember sobbing and being emotionally spent. I also remember her falling in love with a pair of shoes and that making me laugh through all the tears. It is not the memory I had planned to have of her first birthday. There was no monumental cake smash with 8000 pictures, or another 9000 pictures of her trying to figure out to do with a candle.

Honestly, it's left me with a lot of guilt. This whole year I have stressed about making it to Ella's second birthday because she deserves this to be a happy birthday! I don't care what it takes but next Wednesday is going to be a great day (and just typing that sentence I'm now stressed that I jinxed it).

The following Saturday we are having a bday party for her. We decided this a long time ago, but out of fear of continued bad luck I have to admit I haven't made invitations of any sort, or really invited anyone other than family because I am scared (please let me know if you would be interested in coming...we would love to have you).

I feel bad that all my diagnosis memories are tied to Ella's birthday. I will forever know how long it has been since I was diagnosed by thinking about Ella turning one, and now, how long since I finished treatment by thinking of Ella being two (almost there...a couple more weeks). It's a lot to have tied to a sweet little girl's birthday.

One and done

Last Friday Geoff worked a half day while I ran around like crazy trying to pack and take dogs to the kennel and bake and whatever else I thought I needed to accomplish before leaving town for a night or two. 

Geoff came home with Ella just before noon and all of us packed in the car as quickly as possible with a goal of being to the Twin Cities by 5:30 pm. In theory, this was a fair plan, in theory.

Everything started off fine and we were right on track. We checked GPS and opted to go the slightly shorter route to the southern suburbs through LaCrosse. When we got to LaCrosse I had to go to the bathroom, so we made a quick stop. E said he was fine so we kept going. We were still doing fine on time so we made a quick run through a drive through and got back on the interstate.

Of course our stops took longer than we thought they were going to. Then we encountered bumper to bumper traffic on the Mississippi River bridge due to an accident and our comfort zone was shot. By the time we got past the accident we were on track to arrive at 6:15 pm. I won't lie, I was kind of crushed.

The whole reason this time thing was so important was because the Relay for Life we were driving to the cities for started at 6pm. Most importantly to me, it started with the "survivors lap" and I wanted to be a part of it. Well, I also didn't, out of embarrassment, but overall my pride won out and I really wanted to walk that special lap.

I kept the kids entertained with a special bin of toys that I only pull out for long car trips or special circumstances. Usually I keep control of the bin and carefully give distractions out one at a time, but I had thrown all caution to the wind and put it directly between the kids for the ride. They went to town.

We made it across state lines with Ella chanting "I yike tickers! Ella yikes tickers!" over and over, and E yelling "mommy Ella is putting stickers all over her carseat! Ella you're naughty!" I inwardly groaned at the mess I was going to be cleaning up later but we pushed on.

In the end we made up a little time and I think the GPS over estimated. We pulled in the parking lot at almost exactly 6 pm. Geoff and I both sighed and decided we would just rush in and see if we could still make it. We found a close-ish parking spot and just as we were about to pull in we heard the tell-tale sound of copious vomiting coming from E's seat. Then we heard it again. I froze. If I remember correctly, I actually wondered if I closed my eyes it would all go away. It didn't.

So we jumped into action. Cleaning E up. Cleaning his car seat up. Changing his clothes. Wiping him down with wet wipes. Overall he nailed his clothes pretty good, but the mess was relatively well contained.

I had given up on the survivor lap, but we still hurried over to see if there was something else cool going on. We walked through the gates to the middle school track and a flurry of doves, freshly released flew over our heads. Then I looked forward to see a group of people in purple shirts walking with a banner that designated them as "survivors."

Our friend saw us and yelled "go Gin! This is your lap!" Geoff looked at me and said "go!"

I looked down at my not purple shirt, shrugged, and got in there.

I got my lap after all and felt great!

After that lap we settled in a little and thought things would settle down. We were wrong. We didn't account for the fact that 4 year olds, and port-a-pottys don't mix. E hasn't had an accident in I don't know how long, but it was inevitable that he would have one then. Also, it was epic. His shoes were toast and I didn't pack extras.

I didn't know what else to do except utter the words that always fix these types of messes when in the Twin Cities..."Target." (In case you don't know, there is a law or something that there has to be a Target every two blocks...well, that and the Twin Cities is it's home base).

So we made an emergency Target run. We stocked up on wipes. They were on sale so I bought 4 packs thinking I would have extras to put away when we got home. We usually buy "natural care," but this time I bought a mixture of "natural care" and another type called "one and done." The idea had appeal to me.

We also bought a two pack of kiddy pjs for E, a pair of Chuck Taylor's (shoes) on clearance and a little too big, and various other crap that was mildly debatable whether we needed.

We didn't pay attention and accidentally used the 15 and under express lane to check out our 400+ items. We realized we were in the wrong lane when we were "gently" reminded by the 12 year old cashier. I was fairly mortified having just finishing scoffing at someone else doing something similar at the grocery store the day before. Probably it was karma.

After appeasing the kids with crappy Target hot dogs we headed back to the relay. We managed to survive a few more hours without anymore disasters and finally decided we were too wimpy to camp out and we really wanted the comforts of our friend's guest room.

It was totally the right choice. Our friends put chocolates on the pillows and bottled waters and flowers on the bedside table. They made all of us comfy and gave us air conditioned privacy and comfort. Ahhhh! It was great!

In the morning...the late morning...we met up with more friends for brunch. Of course we were late which should have been a recipe for disaster with multiple families, but somehow all the kiddos did just fine. Then all of us headed out for a play date at a "chutes and ladders" park.

This is when things got ugly...again.

We no sooner headed out for the park and I got sick. I needed a bathroom ASAP. Again we headed to  a Target (again like two blocks), but we hit every red light on the way. Btw, did I mention we used to live in the cities so we know where all the Targets are from memory? Anyway, we made it just in the knick of time. I used the bathroom and got an emergency fill of meds and we were back on our way.

A few minutes later Ella started yelling "poop! I pooped! yucky poooooooooooop!" Geoff and I acknowledged her and commented on how much closer to potty training she is getting. Meanwhile, Ella starts yelling loader "POOOOOOOP! POOOOOOOOP! Mommy POOOOOOOOP! DIAPER CHANGE!"

I can't speak for Geoff, but I wasn't feeling so hot myself and I wasn't feeling the most compassionate so once again I stammered something along the lines of "I know Ella, we will change you in a minute. You are ok."

I was wrong.

When we got to the park there was poop everywhere. Like up to her shoulders and coming out the bottom of her leggings. I don't have words to describe what an epic fail her diaper was.

One of friends walked up to the car just in time to witness the catastrophic disaster and he immediately offered to disappear into the park with E. He asked about sun screen and then the two of them disappeared and left us looking like the worst parents ever.

All I could think was grab the "one and done" wipes. They should help. Of course they will.

I took Ella and laid her down on what I thought was grass, but soon realized was actually dirt and just compounded the problem while Geoff did damage control to her car seat.

As I assessed the situation I seriously gave consideration to lighting her car seat and clothes on fire right there. They were that bad.

For the record, it was more like "1000 and done."

Eventually we gained some sort of control over the mess and joined everyone at the park.

After the park we did a reminiscent drive around the cities and eventually headed home. Unfortunately for us, the Ella incident was not an isolated experience. In fact, we were a couple hours into the drive and planning to stop and visit some of my family when Geoff and I both smelled something...We opted to pull over at the next town in case we needed to buy her pjs bc we had already gone through all the extra clothes I had packed for her.

We stopped in the parking lot of one store and sure enough we needed another outfit, but as luck would have it, the store closed one minute before. We cleaned Ella up again, slapped a diaper on her and reluctantly put her back in her car seat with only a diaper on.

She was furious and we had to endure her screaming at us for a few minutes while we maneuvered our way to the only other option, Walmart.

Geoff ran in and got her some pjs. While he was getting her dressed, I went in to go to the bathroom and wash my hands.

At the risk of being a total snob, I am not a fan of Walmart or their bathrooms. I have not had good experiences. This was no exception. Apparently, there was a city wide water ban so the only option in the bathroom was hand gel.

Have I mentioned how many bodily fluids I had dealt with in the past 24 hours? Yes, I had had other opportunities to wash my hands, but I think I could have gone OCD and it would have been completely acceptable after what I had been through. This was not the time for third world contryesque accommodations.

So what did I do when I got back to the car? You guessed it. Washed my hands with a bunch more "one and dones."

Personally, I'm not sure whether I'm more appreciative of these stupid wipes or annoyed at the false pretenses. Either way, we did not make it home with a stock pile of wipes. We did arrive home with a mountain of laundry though.

Regardless, it was all worth it to walk the survivor's lap, see all the luminaries (pictures to come to Facebook soon), see friends, and favorite places.

It's not all bad...

"It's been 10 days since I wrote my last post. I've wanted to write but I've been overtired and uninspired. The days that I know what I want to write about, I'm too tired. The days that I have time and/or energy, my mind is blank.

Today was supposed to be the beginning of my last round of chemo. It was supposed to be a day of celebration. Instead I'm starting my 6th round and I have one more to go. I keep trying to force a good attitude about it all, but its not sticking. I even started crying in my pre-chemo oncology appointment. 

I've been trying to not stress about 5 year survival rates and the really low numbers that go along with my diagnosis, but it hasn't been working for me lately. I know there are so many other factors that go into those numbers. Factors that I have in my favor...I'm not elderly, I don't have other illnesses, I'm strong...but the reality is, I still have the big C....and I still have a particularly bad form of big C. One that doesn't have treatment protocols. One that is known to be aggressive. One that is likely to be lethal.

I listen to everyone talk about what they are doing 6 months from now, or next year, or even in a few years. I think I'll still be here, but I worry that I won't. Really, I'm angry because I wanted to take it for granted that I will be like everyone else does.

As I said, I started crying in my oncology appointment today. I discussed a lot of this with the oncologist and she gave me great reassurance (she's pretty much wonderful). Of course my favorite part of all of this was having her tell me that she has never had anyone respond to treatment as well as I have...well that, and she has not never had anyone that has been "catching babies" while on chemo.

There are things that are good about living with a cancer diagnosis. I know who my friends are. I feel loved. I can say I need a nap now and I "usually" get less flak. I get to do fun little things while I'm waiting for chemo (today it is making beaded rings-mine is on the pinky). 

Addendum 1: this is NOT my hand. Someone originally thought it was and they were creeped out (Completely understandable).

Sometimes we still get meals from friends, or gift cards for take out which makes our lives easier (esp. Geoff's since he does most of the cooking). Our friends and family have done a lot of other things to make our lives easier too (really too many to list).

Another thing that make cancer more palatable is Gilda's Club. Basically, a clubhouse for cancer patients, survivors, and family/friends. I mentioned it in my blog a long time ago, but I wasn't ready to join at that point. A few weeks ago we decided we were ready and Geoff and I went the required new member meeting. Now our whole family (well the 2-legged family) goes on Tuesday nights for family night. We all get dinner cooked for us and then the kiddos go to a play group while Geoff and I go to support groups. Geoff goes to one for family/friends, basically caregivers, and I go to the "wellness" group. Last week was our first week and I was really excited and hopeful that I would meet someone else that I could chat with and relate to. Someone else that is young and/or has small children, but it turns out many of the other small children in the playgroup with our kids are there because their grandparents or someone else has cancer. Many of the other people in the wellness group are much older than me, even retired. They were really excited that I am nurse, and they are really nice, but I'll be honest, they weren't exactly what I was hoping for. Regardless, I've already learned a lot from them, and it is being nice being around others that can relate to the way I feel.

There is also a young adults group, but it only meets once a month. Of course they meet on Thursday nights when Geoff is teaching and I'm home alone with the kids and there is no playgroup on Thursday nights. Eventually I'll figure out something so I can go, but last week it just didn't work.

I also signed up for a group that does mini adventure vacations for young adults fighting/surviving cancer. I don't know all the details or if it will even work out, but I'm excited about the possibility of a one week white water kayaking, surfing, or rock climbing trip. I'm sure that would give me lots to blog about.

And that's all it takes...I spend a little time writing about the positive aspects of cancer and suddenly my attitude isn't so grim. I feel better and I'm back to being ready for another round of chemo. I'm ready to face the fact that right now is about as good as I'm going to feel for the next three weeks. And to know that I have another round after this (the bonus round).

Most importantly I'm ready for Friday. Friday I'm participating in first Relay for Life. Originally it was supposed to be my celebration of finishing chemo (the 2nd, and hopefully last) time. Now it's celebrating that I'm almost there and reveling in all the support I have to make these last few weeks. Btw, thank you to all of you who have sponsored me (for Relay for Life AND, of course, in life). If any of you wish to buy a luminary or pledge money click on the link below.

http://main.acsevents.org/site/TR?fr_id=51717&pg=personal&px=34165209

Addendum 2: Cancer diagnosis leads to really great hugs! I mean way better than average hugs. To me, this is a definite plus.

Addendum 3: Gilda's club is amazing and has taken care of the childcare situation for me so I can attend the young survivors meetings without worrying about the kiddos.

Worst nightmare

Yesterday I was walking by one of the unit secretary's while doing clinicals at the hospital. I saw she was reading an article on Pierce Brosnan's daughter who died of ovarian cancer. My stomach lurched. I craned my neck to skim the article and I saw that her mother (his first wife) had died of ovarian cancer too.

I almost lost it. The real life James Bond lost his daughter and first wife to ovarian cancer?

Ovarian cancer and cervical cancer are both gynecological cancers. Ovarian cancer is known for being particularly lethal, while cervical cancer is known for being slow growing and easy to treat. Since my cervical cancer doesn't fit with "typical" cervical cancer I often identify with the more publicized ovarian cancer.

Regardless, I should tell you what my immediate thought was after reading this article. If you haven't already guessed...Ella.

This was hardly the first time that this thought has crossed my mind. It makes me sick to even think about it. When I was first diagnosed I looked up journal articles and case studies about the specific type of cancer I have. I found multiple case studies of little girls, like ages under 12, that had the same type of cancer. I couldn't read them because that IS my worst nightmare.

I've gone through so much, but I have been blessed to have children and a family. I can't imagine my daughter going through all of this and never having a chance at any of those things. I want to say that I believe there is no way this could happen twice to our family, but I also don't wish to tempt fate.

I really can't even wrap my head around it all because it is just too much.

Of course, I know I don't need to and for the most part I just redirect my thoughts, but reading about Pierce Brosnan's family makes me just ache. I think of Geoff and what all of it would mean for him. I think of E and the implications for him.

My heart goes out to Pierce Brosnan and his family. I can't imagine the personal hell they have gone through. I can't imagine losing your partner and then your child to the same disease.

It isn't enough for me to just fight cancer. I need to do something more, so I signed up to do a Relay for Life. I've been meaning to sign up for a few weeks now. I have never participated in Relay for Life before and a friend of ours organized a team up in the Twin Cities for July 19th, the day after I was supposed (more on that in a minute) to be done with chemo.

It sounds like fun and it's for a great cause, so I registered. If you want to support me and pledge $10 or dedicate a luminaria check out my link (I will eventually add it to the blog):

http://main.acsevents.org/site/TR?fr_id=51717&pg=personal&px=34165209

Oh and about that chemo thing...I had an appointment last week and it was decided that because I am young, healthy (other than the whole cancer thing), resilient, tough, (I'm laughing as I'm writing all these adjectives thrown out by my oncologist) and responding to treatment why not add a bonus round. So instead of 6 rounds I will have 7. I can't say I'm surprised or enthusiastic, but I am in agreement.

If these walls could talk...

I took a little break from blogging over the past week and a half to deal with my grief, to refocus on my (mostly sick) family and to really dive in to my clinical rotation for school.

Esther's death really took a lot out of me. She was a big part of our household and she really was our best friend. On her last morning I did everything I could to keep her content and comfortable. Before our vet arrived I made her a cozy little nest in the living room. We circled around her. We talked to her and we loved her.

When we bought our house in 2007 I distinctly remember Geoff and I calling it a "starter home" and putting it on a 5 year plan. Here we are almost six years later and we have no intentions of moving anytime soon. Life has taken a few different directions than we would have ever anticipated at that point and our "starter home" has become our family home. I have no doubt that we will live here long enough for both of our kids to actually remember it as their first home.

Eventually we still want to move. We would like to live somewhere with a little more land. Geoff would like an outbuilding to serve as a bike workshop. I would like to have a goat and some chickens (technically we can have chickens here). We talk about our dream house frequently. We stay up late looking at houses for sale and dreaming, but what we don't talk about is how hard it will be to eventually leave our "starter home."

I didn't realize when I made up Esther's little nest in the living room that day, that I had unconsciously made it in almost the exact same spot that I hemorrhaged after Ella's birth. Esther took her last breath in almost the same spot that Ella took her first...and somehow it was right.

There are times when our living room can feel cave like. It affords us an incredible amount of privacy, yet it was never my favorite room of our house. It's funny how that has changed. Now when I think of our living room I think it is the room that holds the most stories for our house. It is definitely the room that has held the most laughter and tears (both happy and sad). It has been a place for birth and death in our family.

I wonder how many other people can say that about their homes? Since only about 1% of the population in the US has a home birth I am guessing not very many. For me it has made me very attached to my home. I find myself reflecting a lot on birth and death the last few weeks and I almost giggle to myself when I think "if these walls could talk..."