Merry Christmas

It's been a few weeks since I last wrote. I didn't intentionally take a break, but the build up to this Christmas has taken all my extra energy. I normally write my blog posts after we get the kids to bed,
but these past few weeks I've had intentions of wrapping gifts, baking, cleaning, and general productiveness once the kids are in bed...usually, with no luck. I can barely drag myself to bed after we tuck the kid's in...

I've thought about writing at nap time, but for the most part it's been the same story. Everyday I think I'm going to get some of "my" things done at nap time and I just can't do it, I pass out. There was even a day last week when I told E he could nap with me, but I fell asleep before him. I had told him he could snuggle with me in bed and we would watch a little tv, but I fell asleep and he kept watching...the whole afternoon. I knew I didn't have the energy to convince him to take a nap, so I just went with it.

Today was no exception. I woke up this morning to the sounds of E playing in his room with my dad. They were playing with some of the presents E received from our family Christmas last night. I was anticipating a 3 year old that would be busting to get downstairs to see what Santa had left, but E was completely content to play with a few of the presents from last night (many were still downstairs). Meanwhile, Ella and Geoff were still sleeping and it was 9 am. I know, 9 am. Kids don't sleep until 9 on Christmas!

I got up and took the dogs outside and went to E's room to see for myself if he was actually having as much fun as he sounded like he was having. He was. Then I took a shower and got dressed. By that point Geoff and Ella were awake so we went back to E's room and finally we said something about seeing what Santa brought...The kids were appropriately adorable and funny. At a year old, E barely unwrapped presents, but Ella tears into them with a vengeance. Meanwhile E wants everyone to open everything as fast as possible (he'll EVEN "help") because then he can scope out everything to see what he wants to play with most.

By 11am I was dragging and by 11:30 I was in bed for a nap. I slept for a few hours. When I got up Ella was just finishing up a nap and everyone was working on trying to get E moved towards a late nap. I said good-bye to my parents and brother and then helped to tuck E in for his nap. Then before he was even asleep I was laying back down for another nap. I'm not sure which of us fell asleep first, but again I slept for a few hours.

E on the other hand, had skipped a nap yesterday and stayed up way too late last night so we let him nap most of the afternoon. We did eventually wake him up just before 7pm, but for the first time in I can't remember how long, Geoff and I had enough time to watch a movie without a 3 year commenting on every aspect of it. Ella enjoyed the time with just the two of us, and we enjoyed the extra cuddles.

It really was a wonderful holiday. All of it. I'm sad I haven't had the energy to blog these past few weeks because this Christmas has been everything we needed it to be. It was sweet and genuine. Seeing all the magic through the eyes of our kids made it better than anything I could ever imagined. In fact to quote the Facebook status of one of Geoff's college friends, "Everyone should have a 3 1/2 year-old at their Christmas. Joy, joy, joy." It is so true! Add a 1 year old to the mix and well, you get the picture.

On the other hand, an unexpected difficult part of the holiday for our family was saying good-bye to our elf, Alfred. His last day with us was yesterday before he headed back to the North Pole for his vacation. He was kind enough to leave us a good-bye letter, but daily searches to find Alfred and see his latest antics will be greatly missed by us all. I think I may actually be the saddest about Alfred leaving, but it's not because of his powers of "watching" everything the kids do. Alfred is really just a great example of the magic of our household this past month. 

The hardest part for Christmas for Geoff and I though, is always the evening after everyone has left. Four years ago when I was pregnant with E, we had to put our beloved dog, Chester, to sleep. He had been struggling with lymphoma (a form of Cancer) and it was once all the hustle and bustle died down that we really realized it was time, really time. Up until that day he was happy to follow us around and sleep at our feet and medication kept him comfortable, but that evening we realized he could no longer follow us around or get up on his chair. He just laid on the floor and looked at us.

It was Christmas so our vet clinic was closed. As was every other normal vet clinic. In the end we had to go to the emergency clinic on the other side of town because even the emergency clinic by us was closed. For us that will forever be a part of our Christmas memories. There is always a painful part of the day that we try to find a way to respectfully avoid, but we can't. We always make it a point to honor the memory of Chester on Christmas. We never go for a ride because at least for me, it always reminds me of that miserable car ride with the roads to ourselves and everything closed.

Almost two years ago, when I was again pregnant, we had to revisit that same emergency clinic. At the same time of day and even the same room. This time it was for our other dog, Jeffy. A dog that I had since he was only 2 months old. At the time he was 12, but it was a young 12. We were dropping him off for IV fluids and observation while I was at work for the night because his chronic stomach issues (ulcers vs. pancreatitis) were flaring up. We never expected that he wouldn't be coming home again, but he didn't. We ended up in that same stinking emergency clinic and the same exam room to say good bye to my original baby.

There's more that ties into this for me...like the year before we moved to Madison my first ever cat, also Jeffy's best friend (and mine), had to be put down at an emergency clinic at Christmas time. (ok, ok, so he was actually my FIRST baby, but he would bite me if ever called him that, so...).

I'm sure everyone has sad moments and memories for Christmas and these are some of ours. We each have other loved ones that we miss and think about, but the loss of Chester on Christmas was a hard one for Geoff and I. It was a very painful loss for us together on a day that had always been happy before. Fortunately for us, all of our Christmas's since then have involved happiness and magic that only children bring, but this year the memories have been bittersweet. It hasn't escaped me that I am fortunate enough to be here and cancer free for this Christmas, while it was in fact cancer that took our Chester from us four years ago. He was a difficult dog that many people didn't understand, but he was family to us.

All of this has made me think about everyone else that has loved ones, 2 and 4 legged, that are suffering right now. I think about how lucky we all are to have others in our life; even though, often it seems too short. I think about how lucky we are to have the ability to recall memories, take pictures/videos, and tell stories. Most of all though, I think how lucky we are to be able to make sure that every moment counts and to always tell everyone how much they mean to you.

Merry Christmas Everyone!

Winter Wonderland

So I have a little secret to share...I've been hoping for a few weeks that our first real snowfall would be today...and it was.

I have been checking the weather like mad for the past two weeks, especially this last week because we had our family photos scheduled for today. We wanted to have the pictures done with our horse in an area that if I remember correctly is a former tree farm.

Never did I expect everything to work out so perfectly.

Our pictures turned out beautifully. It looks like a winter wonderland! Want to see for yourself? Check out...https://www.facebook.com/photo.php?fbid=475226495849098&set=at.294181653953584.66243.137126399659111.1172845741.1418611848&type=1&theater

I've known what the kids and I were going to wear for weeks (Geoff is on his own), but I stayed up past 2am making sure everything was ready for our 8:30 appointment. When I went to bed it wasn't snowing and the last weather report I read said that it wasn't supposed to snow until afternoon. I was pretty bummed.

When I got up at 6:30 I was really dragging, but then I looked outside and saw the snow. I was like a little kid on Christmas.

Our kids were pretty excited too when they found Alfred, our Christmas elf, sitting in one of the pine trees. According to E he must have flown there and is hoping that he will fly home for tomorrow morning. Although E did take the time to question me tonight about whether I touched/brought Alfred (in case you don't know...you aren't supposed to touch your elf, it disturbs their "magic"). Anyway, Alfred was thoughtful enough to bring the kids some presents and candy canes too.

It was absolutely magical...Except for the cold part. The kids didn't last long before shivering set in and both wanted to go inside to warm up. We tried jackets/hats/mittens but they were pretty much done.

In the end this was good because I had a very difficult time warming up myself. I didn't realize it until we were driving home, but my jeans were drenched. I had brought some snuggly fleece pants to change into, but I forgot those too until we were halfway home. I had been feeling so well I didn't think anything of it.

After the pictures we drove straight to church to talk with E's Sunday school teacher about the Christmas program next weekend and then headed home so I could change clothes. After that we headed back out to run some errands which was to include going to see real reindeer with the kids, but we didn't even make it a mile before I realized I wasn't going to make it.

I couldn't warm up and I hurt everywhere. I had taken pain meds when we stopped at home and they probably didn't have time to kick in yet, but I knew it wasn't going to matter. This was a get in bed with heat packs and sleep kind of misery. So that is exactly what I did. I slept most of the rest of the day. I woke up when Ella woke up from her nap and Geoff, Ella and I snuck downstairs so Geoff and I could play Wii while E was still sleeping. Geoff was sweet enough to move all my heat packs/heating pads downstairs and I camped there until it was bedtime for the kids.

It amazes me sometimes how easily I forget that I have limitations or how intangible they are sometimes. I had no idea that I pushed it today, much less how far I pushed it. More than likely it was the lack of sleep combined with the cold, but it was the first time I really realized how fragile and vulnerable I still am. I didn't like it.

Repayment

I usually don't write blog posts on Fridays, but I had a few different blog ideas going through my head when I saw this picture -------------> on a friend's Facebook page. It inspired me and I knew I had to write something.

I have always loved helping people. I love giving gifts and surprises and finding ways to make other people's life better. I'm not saying that I'm always the most considerate person, but I definitely do have my moments...

On the other hand, I'm not always the most gracious about accepting help. Sometimes I'm stubborn and insist on doing things myself even when I'm out of my league. Other times I want the help, but I just don't know how to graciously accept...

This is another thing cancer has taught me...Sometimes it just doesn't matter if you can graciously accept, even if you can't possibly ever repay the person(s) for all he/she/they may do for you. I feel like I have learned this lesson over and over and over this year. Ironically, the other lesson all of this has taught me is that sometimes my desire/intentions/insistence to be gracious denies others the pleasure of being helpful, and unintentionally makes me less approachable. As I've learned to ask for help and appreciate help I feel like I've learned I have more friends than I ever realized, and those friends care more than I ever realized.

I know I've always been a private person, but this whole experience has changed that. Between asking for and accepting help, and this blog, I have found a new balance.

Anyway, thank you to all of you that have done something (or multiple somethings) for me and my family during all of this...cards, meals, care packages, visits, doggy daycare, housekeeping....We can't ever repay you, but we sure as hell will try!

In the meantime I hope you were able to get the rush of happiness I get when I do something good for someone else, and also please know that we will pay all the generosity and thoughtfulness we have been gifted forward. We will also make sure that our children are raised to do the same.

True test

It's been a few days since I last posted...It's not because I've been sick or because I have been so exhausted I can't do anything...In fact, it's kind of the opposite...I'm having a hard time sitting down.

This doesn't mean I'm back to my old self or that I don't get exhausted. I'm not and I do. It's just that I finally have a little more stamina and a few more things to do to go along with that stamina. By the time I'm done with everything I want to get done, I am exhausted and I fall asleep before writing a blog post.

It's been a little over a week since I had the blood transfusions, and to me, it feels like a month ago. It seems like compared to how much I've been able to do for the last few months, I've gotten that much done in the last week. This is not actually true, but I will settle for "feels like."

Initially I felt great and then I noticed the chills creeping back in, and the exhaustion, and the crankiness. Then it all kind of settled. As things settled I noticed I would have bursts of energy that coincided with bursts of clearer thinking, so I used this to my advantage. I've made all of this work this week by working, reading, working, reading, etc. The only thing is, the working=household chores, holiday decorating, wrapping presents, or even one day decorating cut out cookies with my mom (she made all of them at my house and despite her demands that I go lay down we decorated all but 2-those two we left for E).

Today was the true test of it all...I had my first oncology acupuncture appointment. Specifically it was aimed at treating the numbness and tingling I've had in my hands for these past few months. Prior to today I have noticed it finally starting to dissipate, so I decided I wanted to see how I would do with just the acupuncture and not taking gabapentin. I took my early morning dose, but no midday dose.

By the time I had my appointment the numbness/tingling was definitely irritating me enough that I was aware I had missed a dose. Personally, I feel like the acupuncture helped immensely. I've thought about the numbness/tingling a few times throughout the day, but it hasn't irritated me into needing more medication. I'm hoping that the combination of all of this fading on it's own and acupuncture will finally allow me to fully taper off gabapentin.

I'm still taking Ibuprofen, or Tylenol, here and there or occasionally a half a Norco (similarish to Vicodin) at bedtime, but I'm also trying to cut back and eliminate the need for any of these. Last week I was still taking Zofran for nausea and this week, I don't think I've needed it all.

I'm optimistic about this next week, but not as optimistic about the following week...I'm dying to get my lifting restrictions eliminated so I can pick up Ella again. E understands to come sit on my lap or that I can't pick him up (most of the time). It makes me want to pull my hair out at times because it takes him so long (mostly due to self imposed distractions) but E can get in and out of his car seat himself and climb into the car, bed, into the bath, etc.

Ella on the other hand will cry, run to me with her hands outstretched and say "mama!" and I can't pick her up. I crouch down on the floor, and often she will walk away, but as soon as I stand up she will reach for me again. Worse yet is when she falls. She is a toddler and therefore, toddles and trips frequently...It is just painful for me as I realize I can't scoop her up into my loving arms the way any other mom can.

Don't worry, I'm fussed about it, but not too much. We've come this far, we can make it another week. I just need to be careful that I don't overdo it the minute I can lift them again just because I can...I know I will be tempted...

Magic

I have so many things running through my mind today I don't have a clear idea of what to write.

What keeps coming to mind is the highs and the lows of this season. I have read more sad Facebook posts this week than ever before. People who have lost loved ones, have medical issues, financial hardships...

There is a part of me that relates on some level to each and everyone of them and there is a part of me that doesn't. Regardless, my heart goes out to all of them. I wish I could help them all.

There have been plenty of happy stories too, but that is how the holidays are isn't it? The sad stories are there to make you really appreciate the happy ones?

This year we are a happy story. It makes me feel selfish to say that, but it's true. Of course it isn't just me...We have a 1 year old who is just discovering the magic of the holiday season and a 3 year old who is completely immersed.

We are still struggling with not enough time, money, or energy to do all that we should, but who doesn't? Tonight there is a list of housework we should have done...laundry, litterboxes, general cleaning, floors...but we hung Christmas lights. (really, I did one bush and then Geoff did the rest) It's not anything fancy but we are so pleased with ourselves.

It is something that has been incredibly important to me this year. I've wanted lights so when I'm having those bad days I can look out the windows of my own house and see them. More importantly, I've wanted them for the kids. They love all the lights when we go anywhere in the car, so it makes sense that they would love them in their own yard.

E was very happy to help me with my contribution and Ella stood at the door and watched Geoff almost the whole time he was outside. Giggling and clapping and chattering away...It didn't take long once we figured out where all our lights were, but it was completely worth it!

It made sense to take advantage of the warm weather tonight. We'll get chores done another night and we'll get a tree another night. We still have plenty of indoor decorating to do too, but last night our elf, Alfred helped us out by decorating one of the bathrooms. He did a pretty good job too! He even left coloring pages and a snowflake craft project for the kids.

The looks on E's and Ella's faces were pure magic when E went to go potty and found him...I look forward to whatever magic Alfred, the Elf, will bring tomorrow.

Great Aspirations

One of the greatest struggles of cancer is not just the fighting the cancer, it is figuring out how to balance your "normal" life around it.

I've talked here before about my struggles with work, school, parenting, etc. Everyone always has kind words of encouragement and some are even able to relate to a degree. It's hard though...I'm 35. NONE of my friends have cancer. The only people I know that were an age similar to me and have had cancer have all lost their battles (different types of cancer, different stories and different decades of medical advancements). Scary none-the-less.

There isn't anyone I know that has had a similar type of cancer, or gone through a similar treatment regime, and had small children. Honestly, if you ask my oncologists, they will tell you it's not the norm either, but you wouldn't even need to do that...just walk through the waiting rooms. None of this is catered to my demographic. 

At the same time, I know I'm not the first parent to have cancer by any stretch. It's just that a dad having cancer isn't the same as a mom. A mom that has cancer with a 5 and 7 year old, isn't the same as a 1 and a 3 year old. Not that any one of these is better or worse than another...it just depends on the individual circumstances.

Another situation that is not characteristic of all cancers is my treatment. Many people have chemo or radiation or surgery, but honestly it isn't common for someone to have the works. Individually I was able to bounce back pretty easy from each of these treatments, but when you combine them the cumulative effect is really hard for me to take. Add in my kids. Add in other responsibilities. Take away school and work and it doesn't matter, it is still TOO much!

Another thing about cancer and being a parent is that I REALLY REALLY care about milestones! (Anyone watch the show Parenthood lately? I find it difficult to watch bc it is typically spot on). I want my kids to have ALL the magic of Christmas. I want ALL the magic of Christmas. I find it ironic that Macy's theme this year is "yes Virginia, there is a Santa Claus." A phrase that I have characteristically hated most of my life and now I want one of those "Virginia dolls" for Ella (and me) more than anyone can imagine.

Last weekend the kids had photos done in a Candyland theme (pics to be posted soon). Yesterday we had the dogs photos done with Santa in the afternoon at their doggy daycare (pics from that to be posted soon too). After the kids woke up from their naps we headed to our downtown for the annual firetruck parade and party at the fire house. At the fire house we had the kids photos with Santa (not very popular with the kids), we had face painting, and the kids had balloon airplanes and flowers made. Next weekend we are having family photos done. For the record I hate having my own photos done, but I have realized that this is really important. It is important for me to accept who I am, and it is important for us to have photos of us as a family. You never know what is going to happen next.

I suppose that many of my feelings on all of this are exacerbated by the fact that I had the postpartum hemorrhage after Ella was born 16 months ago. Honestly, I don't think about the hemorrhage much anymore, but when you combine that with my cancer it feels to me (yes, this may seem dramatic to you), like I have escaped death twice in less than 2 years.

Honestly, it doesn't really feel like I have escaped death at times. It feels like I'm clawing for every inch I can get between me and it some days. On one hand I love hearing how good I look, or "wow! I never would have guessed you had cancer," but on the other hand it makes me feel like my battle is an even more private and painful battle. No one sees my scars or my wounds. Most of it is internal.

There are a lot of days when I just hurt. My joints hurt. The numbness and tingling hurts. My stomach hurts. I just want to cry, but I have my kiddos to worry about so I don't cry until I go to bed. Geoff helps me get my meds, my heating pads, whatever and often we watch something on Hulu Plus or YouTube until my meds kick in and I can go to sleep. He is great and I don't know what I would do without him.

Knowing how taxed he is and how easily taxed I am, I asked my parents to come and help us over the weekend. I told my mom that we wanted to do the photos with Santa and the dogs, and take the kids to the firetruck parade, and the activities associated with it. Beyond that I wanted help finishing winterizing our yard, putting out Christmas lights, getting out Christmas decorations (I can't even lift the bins, much less have the energy to decorate the house), and if time, make Christmas cookies with the kids. More than anything I wanted this for my kids.

My parents came Friday and my dad spent the day doing the yardwork. My mom helped me with the kids and folded laundry while I tried to move toys around in the living room (which is still a disaster still waiting to be repaired). My dad declared he wouldn't help with Christmas related things and then Geoff came home from work. I had ordered a dress for his work Holiday party, but the dress arrived and um, was not what I wanted. It was black sparkly lace with a nude underlay that left me looking very naked underneath. As Geoff put it as he laughed "I would be looking for bits with that dress." Not the look I was going for. So he and I asked my parents to watch E and we headed out with Ella to return the dress and attempt to get something else. We didn't come home until 10ish. I was burnt out, overtired, and frustrated beyond belief. I was crying and convinced I would never find a dress that would suit my first all adult adventure (not treatment related) out of the house in nearly 6 months.

Yesterday I woke up and all of us ran to get the kids to swimming lessons. Since the kids are in the same lessons and I can't go in the pool for a  few more weeks we took advantage of having grandpa available for swimming lessons. Then we came home and everything fell apart.

My exhaustion combined with my expectations kicked in. I tried to articulate what I wanted done to an audience that was convinced the best thing to do was to point out that I was being emotional. My father is very stubborn (it may be where I get it from and he HATES emotional) so he stopped listening immediately. My mother told me all I was doing was criticizing everyone as I attempted to articulate that there was a difference between helping their way and helping the way I wanted to be helped.

I'll use an example that is unrelated to the actual events...my version would be "could you help me put away dishes in my kitchen and straighten up" and their version would be to rearrange everything in my cupboards and tell me how I had everything wrong to begin with and it's better this way. I understand the intentions, but it isn't helping. It's causing more frustration and disrespectful to the fact that the kitchen is half mine and half Geoff's and everything has been put in a place negotiated by the two of us.

I attempted to plead my case, but no one listened. I was told many times that no one needed to listen to me because they already understood. It was apparent to me that no one did understand and you know what, because of everything else lately, I realized it was really important that I am listened to this time. I had asked for the help this weekend, we were the ones that needed it, and it didn't seem right that we were being told, no, you don't know what you need or I won't help with Christmas related work (I specifically requested this type of work ahead of time).

There was a lot of other drama involved that does not need to be mentioned here and my parents left. Eventually we were able to renegotiate via cell phones and they came back so my mom would watch the kids and put them down for naps so we could still do pictures with the dogs. In exchange, Geoff agreed to sew zippers in a few hunting vests/jackets my dad wanted, but my dad refused to come in our house while Geoff worked on these for hours. In fact, at this time my dad is potentially refusing to ever come back (this has happened many times before). Personally, I'm not sure I ever want him to come back, but on broader scale I'm concerned how that effects everyone else and family relations, so while I don't want him back here, I'm sure I would let him back if/when he changes his mind.

Santa and Crabby, the littlest reindeer...

There is so much more I can say. There is so much more I want to say. I'm angry and I'm frustrated. I didn't write anything last night because I was aware of this. I needed to sleep on what I wanted to say. I don't want to air my family's dirty laundry in my blog, but at the same time, I don't want to pretend it isn't there.

Everyone has their drama. No family is perfect. My family is certainly no exception. Of course, we normally try to pretend differently. All of it is hard for me to take on a good day, but when you combine cancer and exhaustion, it seems really unfair. I didn't want any of this. My father was incredibly disrespectful to me and my family, but he is my father. Life is too precious to hold grudges, especially when there are small children involved. I want my children to love their grandparents, even if I don't always like those grandparents. So here it is, cancer sucks...but cancer also teaches you what is really important. Cancer makes it obvious where priorities should be. In my world, that is always with my family and kids. So if some old scrooge wants to be grumpy, mean, and stubborn beyond belief, I'll be here hurting, but waiting until he is ready to get over it.


P.S. I may not have gotten what I wanted done...I know it still ended up being a pretty great day for the kids, so it was also a pretty great day for me! I love all these pictures!

Brief

The magic of the transfusion is wearing off. I'm finding myself very tired, a little cranky, and occasionally cold again. On that note, I'm going to keep this very brief...

I saw a quote on the Facebook page of someone I greatly admire today. It felt right to me so I decided to share:

♥ I am STRONG because I know weakness • I am COMPASSIONATE because I have experienced suffering • I am ALIVE because I am a fighter • I am WISE because I've been foolish • I can LAUGH because I have known sadness • I can LOVE because I've known loss ♥

In the moment

So I was home with the kiddos today and it was great. Not easy, but I love days with my kids. All of us are so much happier.

There were parts of the day were I feel like I wasn't been a great mom because I wasn't taking the kids outside or creating stimulating play environments, but we survived and we had fun.

I will admit we watched a lot of kid tv and I felt really guilty about it...but really who cares? I have a good reason AND we sing along and dance along and it spawns into crazy play scenarios for the three of us, so is it really the worst thing? Plus we all snuggle or E uses some of his tv time to sit on his potty chair and take his time going potty.

There were no temper tantrums.

The hardest part is still the whole can't lift the kids thing. In our house with many levels it is difficult to chase down a 1 year old that doesn't want to sit for a diaper change. I have to try to convince her to lay down or get her to at least sit down and then try to keep her occupied while I change her diaper. She always lets me get the diaper off and will usually sit while I clean her up, but when I go to put that clean diaper on, all bets are off...We have a streaker. Actually we have two.

So that's the hardest part of my day.

Geoff came home on his lunch break to help me get the kids down for naps and E was already asleep. He walked Wilco, our wiener dog (the Coonhounds were at doggy daycare, but Wilco stayed home with me today) and Ella and Ella came home asleep. All of us slept all afternoon until Geoff was on his way home from work. It was amazing!

Emotionally my day hasn't been as easy, but there are going to be days like this. On Monday my NP said something about the adrenaline that goes along with all the treatments, etc. has probably finally worn off and she's right. I never thought about it that way, but it's so true. Now the reality of everything is there, but I'm not in the midst of treatments that make it easy to have a tangible reminder of how lucky I am. It's easier now to realize that I still have months of recovery and my life will never be the same. In some ways that is good, really, but in a lot of other ways, there is still a lot of mental/emotional adjusting to do. I'll get there, but I need to give myself some time to grieve too.

The hardest part right now is the whole school/work thing. I'm glad I took a break from school and I'm glad I'm not working right now, BUT...there is a lot of self-worth associated with both of those things. I'm not ready to resume either right away, but every time I start to feel better it is the first thing I start to think about. I have a hard time when people ask me what I am doing right now being ok with admitting I'm not doing anything. It's hard for me to just say (in fact I don't think I've ever said it...) "I'm a cancer patient right now." Even as I write that I think, but I don't have cancer anymore. Oh well, I'll figure it out. Or not. I really don't have to. I'll just continue to take each day as it comes and say what works at the moment.

In the meantime, I'm going to get some more rest and look forward to taking E to preschool tomorrow by myself.

Temper tantrums

I skipped my neuro appointment.

Ok, not exactly. More like I missed it, but I had options...It went like this.

I got up with Geoff and the kids and we all drove together. I've been so exhausted and having such poor ability to concentrate it hasn't made sense to drive. At the same time, I didn't want Geoff to miss more work to drive me from one medical building to the hospital and then pick me back up when I was done with my blood. Instead I rode with him. We dropped the dogs off at doggy daycare. We dropped the kids off at daycare. I dropped him off at work, and then I went on my way.

The plan was I would pick him up when I was done with my transfusion and he would drive me home on his lunch break. Then he would go back to work and bring everyone home like normal.

By the time we were almost at the kid's daycare I realized it was getting really tight. Geoff offered to change the plan and drop me off instead, but I refused. He's missed enough work lately and I was looking forward to my few minutes of freedom. I had about 2 miles to drive to get to my appointment. My appointment was scheduled for 8:30 and at about 8:35 I called the clinic to say I was just about to the parking lot and I was running a few minutes behind. They told me I would probably have to reschedule. I told them fine. They offered me a few spots in December. I told them I would rather not come until January.

So here is the deal. They ticked me off. Not because they were busy and couldn't accommodate me. I'm constantly running late. I don't know how other people with small children do it. I've never figured it out. Actually it is Geoff and I. We are a terrible combination for tardiness. In this case though, the neurology clinic staff was exceptionally rude.

I had already had a rough morning dealing with multiple temper tantrums from a three year old who kept me up part of the night because he decided to have a party in his room at 4 am. I snoozed an extra 5 minutes, so maybe that would have saved me, but I don't think that was what killed me. It was the only mommy can get me dressed temper tantrum as Geoff tried to dress him and I dressed Ella. Then it was the "no, I want you to carry me down the stairs Mommy" temper tantrum and the "I neeeeed you to put my shoes on (because I can't do it myself today) Mommy" temper tantrum. Then there was another about getting everything into the car and another about getting him into the car. It was absurd. It was also obvious that he was extremely overtired. There were more tears shed about going to daycare and about getting out of the car and about me leaving him.

So back to the neuro clinic. When they were rude to me, I decided the hell with it. I was never sure what this appointment was going to accomplish. Don't get me wrong, I want the numbness and tingling to go away, but from everything I've been told it was going to take time. I don't want a bunch more tests and appointments, and besides I hate neurology. There I said it. This is my temper tantrum. I knew I was being ridiculous. I also know that I'm not hurting anyone else. But, you know what? This is something I can control and I needed it. So I'm not going to the stupid neurology clinic until January (unless there is a drastic change).

I thought about going home, but I realized then I would be late for my blood appointment. I opted instead to go to the hospital and get myself a bagel from the cafeteria. Then I headed up to the chemo waiting room where I surfed the internet on my ipad and read trashy magazines. I also took advantage of the free hot cocoa for the warmth. After an hour I finally headed back for my transfusions. I discovered that I was slated for two units of blood instead of one so I settled myself in for a few hours with big plans of reading a new book and organizing my life.

I fell asleep about 20 minutes later.

I slept through the first unit of blood. I enjoyed my 3 warm blankets and my dark curtained off chemo cubbyhole. It wasn't exactly quiet, but it's all noises I am intimately familiar and comfortable with. IV pumps, nurses talking at the desk, patients walking with their IV poles, etc. About halfway through the second unit of blood I found myself wide awake and energized. I swear whomever donated that unit drank 5 mountain dews and ate like 10 cookies right before donation. I've had transfusions before and I remember how much better a few units can make me feel, but this was nuts! I was bouncing off the walls. Suddenly I wanted to be done. I was done with my warm blankets. I didn't need them anymore and when I called Geoff to let him know I was leaving the hospital I believe he muttered something along the lines of "oh geez...I guess you ARE feeling better..."

I cranked the radio and sang along at the top of my lungs. When I got to Geoff's office I got out of the driver's seat and literally ran around to the passenger seat. After that I mellowed back out a little bit, but Geoff spent most of the way home trying to get me to promise to take a nap this afternoon so I wouldn't crash this evening.

I did eventually nap, but that killed the momentum. Don't get me wrong, I think it was the right move. After the nap I was able to keep a slightly slower than normal pace for the rest of the evening. We watched "How the Grinch Stole Christmas" with the kids and tried to teach the kids the songs E needs to know for the Christmas pageant at church (he was not interested in learning them tonight, but Ella has one of them down).

Tomorrow I'm on my own with them and I'm optimistic that I'll have enough energy to cope. We can't go anywhere since I can't lift either of them and Ella doesn't climb in and out of the car the way E can. So we'll have a low key quiet day at home.

In case you are dying of curiosity, my cancer flare for the day is another button that says "I'm a real survivor" (the I is a palm tree and the survivor is in a font that mimics the tv show slogan). Selection was limited and this was appropriately cheesy without being related to breast or prostate cancer.

The Vampire Diaries

So I have missed a few posts lately and I could easily attribute it to the season, but that's not it...

I had no wi-fi at my parent's last weekend, but I still could have posted from my phone, used my parent's computer (which did have wi-fi ironically), or gone somewhere else. I also could have written my post without a connection and posted when I did have a connection, but that thought never occurred to me. The reality is, I had budgeted and expended all of my energy before realizing the difficulty with internet.

Last night I didn't have an internet connection issues, I just had energy issues. I fell asleep on the couch at 8pm. I was asleep before either of my kids. When Geoff woke me up to go upstairs, I had no interest and wanted to stay on the couch, but he convinced me to come upstairs for the kid's story time. As soon as we were done I went to bed.

In addition to falling asleep at an abnormally early time, I have also been unusually cold, ridiculously irritable, and completely exhausted. I can't think straight and I certainly can't concentrate. I am so relieved that I took a break from school, I don't know what I would have done otherwise. All I want to do is hibernate. Last night when I fell asleep on the couch I had the fireplace on and I was sleeping with a  heating pad for my back and another on my stomach. That was blissful, everything else is torture.

So I'm still anemic.

Usually when I'm anemic I crave red meat, but not this time. Right now it repulses me. One of my favorite drinks is Kale and Apple Juice, but right now it holds no special appeal to me. Regardless Geoff picked some up for me from the co-op last night.

So this morning we went to my nearly 2 week post-op check up. My wonderful NP asked how I was doing and I told her everything as I sipped my Kale Apple Juice. Her theory was that I am still anemic and chemo/radiation/surgery has finally caught up with me. She told me I still deserve a super-hero cape (god, I love her), but I need to rest! She looked at the incision in my belly button and agreed that it looks good. We also met with my gyn oncologist/surgeon and I now have 3 weeks until my next appointment. The best part of today? I did not have to remove my pants!

After my appointment I headed to the lab. I decided to have my port accessed so it could have it's required monthly flush. The port worked beautifully. Seriously, better than ever.

This afternoon I got the results and I am still anemic. My levels have come up some in the past two weeks (for those who understand...my H & H is now 9 & 26), but my NP still offered a transfusion. I feel like crap, so it didn't take me long to decide. What the hell? Tomorrow morning I have a neurology appointment (for all the numbness & tingling in my fingers...I don't know what they are going to do, but again what the hell do I have to loose?) and then I have an appointment in my good ole chemo stomping grounds for a blood transfusion. I'm looking forward to getting more cancer flare.

We'll see how it goes. I'm pretty optimistic.

If I'm completely honest though, I wish I was giving blood instead of taking. I've donated blood since my 16th birthday (the blood mobile was at my school that day and I used it as an opportunity to get out of a class). When Ella was born I needed a few units. I planned to give blood as soon after her 1st birthday as I could arrange (you can't give blood for a year after a transfusion), but then I found out a week before her birthday that I had cancer.

Now I don't know when or if I'll be able to donate blood again. It's my nature to want to give and not take so it bothers me that even though this is by choice, I'm taking. So since I can't give myself, I'm going to ask that if you want to help me, donate blood. I can't do it, but many of you can. Even if one of you donates blood you can replace the blood I'm going to use tomorrow. I promise your sacrifice will be appreciated!

Happy to be Home

This weekend has been all about being happy to home...

On Thursday we went to my childhood home. We planned on spending the Holiday and the night. My mom volunteered to stay home with the munchkins in the wee sleeping hours so Geoff and I could do some Black Friday shopping. To us it was less about the great deals and more about the freedom and the adventure. In the end, we didn't stay out very late/early and opted instead for sleep and a little sleeping in before mom and I headed back out for shopping.

We all had fun with random deal shopping and being in Appleton so we decided to stay an extra night. Overall this worked well for us. The kids had fun, as did the dogs, and by the looks of the house when we came home, so did the cats.

Later this afternoon we came home to our house. As always it is sweet to come home. The kids took baths and went to bed early (early for our standards). Actually so did the dogs, cats, and bunny too.

I loved being home for a few days and I love being in my own home even more.

Thankful

Yesterday I didn't write because I slept most of the day. In fact, I pretty much slept from the time I wrote my post Monday afternoon until noon yesterday. Then I took a shower and got dressed, took a nap, went to a silly preschool conference, Target, and checked on Aggie (my horse) and back home to put the kids to bed and sleep some more.

I ended up with what whatever viral/flu-ish crud E has (Ella has it too) so it wasn't completely blissful, but for the most part I enjoyed being able to sleep. I also started a trashy non-textbook, but only read a chapter or two, and I knitted a little bit.

I'll be honest. I am completely thankful that I took a break from school. I am exhausted and I do need this. I just needed some sleep to really realize it. Now my biggest problem is deciding what to do with my free-time. Sleep, knit, quilt, games or crafts or other with the kids, make Christmas presents, decorate for Christmas, or oh wait, I'm supposed to be relaxing...

Today I was home alone with the kids (this is significant because I have restrictions such as no lifting my kids, etc...). I knitted and read, made Turkey crafts with the kids, read a bunch of Curious George and other books, watched some tv, and took it as easy as I could....but...There is always a but, isn't there? I forgot to take pain meds all day. Geoff came home to find me curled in a ball crying. We decided this was an appropriate circumstance to upgrade to Vicodin and I curled up with my beloved heating pad. An hour later and all was well again. (I am VERY thankful for pain meds!)

This evening we received a phone call that made my day seem inconsequential. Geoff's parents called to let us know that family that was visiting Geoff's grandparents in Australia had just flew home to the US a week early. Apparently a loved one not related to us wasn't feeling well and tests revealed end stage lung cancer. Neither of us have ever met this person, but this news had Geoff and I crying.

We decided to take the kids for a ride to get them to sleep so we could talk about how we hurt for the family members we do know and the family members we don't know. We hurt for the similarities to our own journey and our own "what if" fears. Most of all, we needed to talk about how much we are thankful for.

Happy Thanksgiving everyone!!!

Black Monday

It's almost 3pm and I am done with today. Really the only good thing I can say about is that in 9 hours it will be done.

The day started with me getting up to help Geoff get E to preschool. E normally only goes to preschool on Thursdays and Fridays, but since there is no preschool during Thanksgiving he was doing a makeup day today. Geoff and I were talking to E about getting dressed at the top of the stairs and suddenly E threw up. And then again and again...So instead of preschool E got another bath and an appointment with the pediatrician.

Of course all of this woke up Ella and this is also the exact time that my mom and brother showed up to help. Which would have been great, but no one knew how to help. Instead everyone seemed to be running in different directions and then Geoff left for work.

The craziness never stopped for me. There were miscommunications and everyone seemed to be generally frustrated. I decided to go to the grocery store to get some pedialyte and white bread for E. I got in the express check out line and put my stuff down on the conveyor belt. As I was digging in my purse for my debit card, the old lady ahead of me was charged for my purchases. Of course no one noticed until the grocery store attendant went to bag the lady's groceries. I looked up and realized those were my purchases and spoke up. The attendant gave me the dirtiest look and was quite exasperated with me. She sent the lady to the service desk for a refund and re-rang my purchases up, this time charging me instead. Somehow though she made it seem like I had tried to steal from the elderly. On my way out, I made sure to apologize to the sweet old lady again, and then I started crying.

I've been doing great with recovery so far, but today I hurt and I don't feel good. Combine that with E and all the insanity of our house and I really just needed a nap. Meanwhile I get home to more insanity. It took until 11am before I was able to sit down and have 2 slices of toast and a glass of juice myself (please note that I had made toast for myself prior to this point but all of my toast was devoured by one of my 2 kids whom had already had their own breakfast and was ready for seconds)...also note: This is why food help makes such a big difference!

So I decided that maybe I would try to take a nap. I went upstairs and made the mistake of checking my email. Last Friday I decided to apply for a few positions at UW. I am currently still employed by Watertown, but I have no position and there aren't any OB/Gyn positions posted. In fact, there are only 2 positions posted total and I have no urge to work in Float pool or their general floor. I've missed UW and after being a patient these last few months I have renewed respect so I was pretty excited and optimistic about applying. Apparently I was delusional because I got a mass rejection letter in my email today. I called to talk to the HR person and was transferred to voicemail so I left a message and decided instead to mess around with my iPad.

Yesterday E deleted most of the main icons on my iPad...such as the Safari, Email, Music, Videos, in addition to Facebook (and recently YouTube). It was annoying but I restored most everything so I decided to really try for a nap. 10 minutes later in walks Geoff to take E to his pediatrician appointment.

I declared I was going to stay home and sleep since I was cold, achy, nauseous...Geoff agreed, but E threw an epic temper-tantrum. He screamed "I WANT MOMMY!!!!" loud enough that I probably don't even have to tell you this part. For everyone's sake I reconsidered my nap and away we went leaving Ella with Grandma (and uncle Kevin).

At the pediatrician's office E wanted me to hold him or pick him up. He knows I can't carry him right now, but that doesn't always matter. I feel terrible and so does Geoff, but E only seems to want what he can't have. I'm sure everyone else listening to us is wondering why that mom refuses to pick up her child, but whatever.

As soon as the pediatrician entered the room, UW HR called. I quietly excused myself and went outside to talk. As it turns out they really won't consider me for the pediatric positions I applied for because I have no prior pediatric experience and most any other position they won't consider me for because I'm in midwifery school and they figure I'm going to leave them in a year or so. Basically my only option is to call my former manager and ask him if he would consider rehiring me. So I started crying again.

I pulled myself back together and went back inside. Before I even got to E's exam room I heard him screaming "NOOOOOOOOOOO! I NEED MOMMY!!! I NEED MOMMY!!!" I entered to find the pediatrician trying to listen to his heart through her stethoscope. She may now be deaf.

Her suspicion is E has some horrible version of the flu going around. She figures he may be over the worst of it and she gave us a list of foods to not give him, but most everything else is fair game. We'll see about that. Maybe we will wait to try expanding food choices until we have a clean rag towel in our house. Currently the other 300 towels are covered in vomit or in the laundry.

Had enough yet? So had I.

E threw more temper tantrums leaving the clinic and even more on the way home. Btw, this is not at all normal for him. He screamed the whole way home about wanting to go to the park and yelled at us to "stop the car! stop the car right now!" Then we got home and the drama continued over removing his shoes and jacket. He yelled at Geoff "Daddy you need to go back to work! Go!" *eye roll* None of us were impressed. My mother chimes in that this is how he has been treating her and that he doesn't seem to love her anymore. I know it's hard to be targeted by the bullying of a 3 year old, but I just can't calm him down and reassure adults right now. I was ready to cry again.

So my phone rings.

I look at the clock and of course, it's 2pm. Time for my conference call the with director of the midwifery program at my school. As I have mentioned before ALL of my professors want me to take an emergency academic hiatus. I have refused profusely, but this week my adviser and another professor finally wore me down. I agreed to consider it. It isn't what I wanted, but I'm so tired and stressed that I decided maybe it is for the best. I agreed to it. Paperwork is done and submitted and crying has recommenced.

So now I don't have cancer, but I'm on a medical leave from my job, but I don't actually have a position at my job. My former employer has nearly 80 positions available to external candidates, but I don't qualify for many and the rest they won't consider me for because I am in midwifery school. Except I'm not actually in midwifery school at the moment because everything thinks I need a break to deal with my health. Meanwhile I can't get a break because my sick 3 year old demon wants all my time and attention or screams at the top of his lungs and throws up.

So back to what I said before...only 8.5 hours until today is done. Both kids are currently sleeping and hopefully soon I will be too...except I think I'm going to keep sleeping until tomorrow. It's not like I have anything to get up for...no school...no job...and a whole lot of self-pity....scratch that, I need to get up and eat some of the amazing food from yesterday, but then I'm going back to bed before I start contemplating working at McDonalds or a gas station (not that those aren't valid jobs, but considering all my years of school and experience...I feel pretty crappy!)

Feast or famine

I view much of what I blog as a shared journal of my cancer journey. It is a way for me to be able to remember and reflect. It is also a way for my to share my experiences.

What I have to talk about tonight is a reoccurring theme throughout my treatment. Geoff and I laugh about the meal support we've received. Before I say anything else I want to point out that we appreciate EVERYTHING EVERYONE has done! Now I am going to tell you the truth about meal support...it is feast or famine. Literally.

Tonight the theme is feast. I usually don't include weekends on the meal sign-ups because I figure we can eat left-overs, get take out, or fend for ourselves. It isn't as hard as the weeknights when Geoff has to balance everything else with work. I also don't include weekends because we are sporadic and rarely sitting at home. Honestly, I just don't do sitting at home. Even when I am miserable I usually ride along on errands, walk around Target or better yet, putz around a cute little boutique. Then I go home and nap so I can do it again.

I get cabin fever sitting at home for more than a day or two. This used to drive Geoff nuts, but I think that he's given up. At the same time, this is part of what exhausts him.

So back to the meal planning...

Originally there was no plan for tonight, but Friday a former co-worker friend asked if she could share some of her family's Thanksgiving food (they were planning a family Thanksgiving dinner for today). Then yesterday a classmate of mine set up a plan to have Jimmy John's delivered for us tonight.

Geoff and I felt blessed. I also felt guilty. I feel like a food hoarder or like I'm cheating on someone. It's not that any of the food will go uneaten or unappreciated. Really.

Then, the person that was to make our dinner for tomorrow asked if she could bring her food today too. Secretly I was pleased. This means all our food for the week would be done and taken care of. I wouldn't have to worry about scheduling times or being awake for food drop-offs for the rest of the week.

At the same time, I was mortified. What if everyone showed up at the same time and they saw me for who I really am? Would there be yelling and a giant food fight? Would everyone take their food and leave assuming we don't appreciate everything they have done for us?

We still have freezer meals so we would all be ok, but honestly, we are tapped and we really rely on these meals.

I'm really tired and I can't lift anything more than a gallon of milk. This means no kids, no laundry, no anything in our house...In other words, all of it falls on Geoff. He was already tapped out and he used to do most of the cooking. I do a lot of the dishes, unloading/loading the dishwasher and general cleaning up and even with everything prepared for us that seems like too much at times.

So 3 meals on one night...It was great! We had dinner taken care of and now we have lunch and dinner for the next couple days taken care of. Then Thursday is Thanksgiving and that's taken care of too. Next weekend we'll do leftovers and freezer meals and then we'll see where things go from there.

Not really over...

The last few days have been pretty great. I don't really feel like I had major surgery. I'm really anemic this time and I can tell that, but that combined with some pain that's about it. Before I left the hospital the results of my labs came back and they asked if I wanted a blood transfusion or two. My NP told me to think about it, but that there was no pressure. She also said if I changed my mind I could always call later and say so. I would just have to come back in. I really don't want to, but Geoff has asked me a couple times the last few days if I should reconsider.

This morning we made a list of errands we needed to run. Most of them I was just going to ride along in the car with so Geoff wouldn't have to take the kids in everywhere we go and I could get out of the house. There are a few places that I really want to go in, but I don't have a lot of energy to run errands.

It's 11:30 and we're putzing. None of us were up before 9 so we'll get going soon, but what really slowed us down was a phone call from my surgeon. He called to see how I was doing and to give us the pathology report. I told him I was doing great and he was appropriately pleased. Then the sucker punch came...Remember that MRI I had a few weeks ago that showed that I was cancer free? Well, I've learned not to completely trust these things, but at the same time, I think they are usually right.

As it turns out, the pathology report from my surgery showed I was not cancer free. There was a small amount (like millimeters) of cancer that had spread to my uterus. All the margins came back clean (this means that most likely all the cancer was contained and the edges of all the parts removed from me showed no cancer).

I think this hit all of us with mixed results. My surgeon sounded really optimistic and positive but there was an underlying tone of concern. Geoff and I both are not surprised and yet very surprised. I'm sure that doesn't make sense, but it does to us. We really weren't surprised to hear that there was cancer in my uterus after all, at the same time it scares the crap out of us.

No one really thought it had spread. Most of tumor board really thought it was gone and therefore recommended against the surgery. There is no doubt in my mind that I'm glad that I did the surgery. I'm fairly optimistic it is all gone, but there is that what if? What if it spread somewhere else and just didn't show up yet? I want to be done.

This feels like a cruel joke. I'm still waiting for him to call back and say "just kidding."

Overall, it probably will be nothing. They did the surgery. They should have gotten all the cancer and we'll  move on with our lives, but only time will tell. For right now I need to move on and get going on those errands, but it's hard not to crumble and cry.

Update: We decided it was best to call back and get some clarification so Geoff called my surgeon back and talked to him. As it turns out the cancerous area was the area that has been in question all along. It was not a new area. In fact, he said there could still be argument that the radiation was still working to that area so I potentially didn't need the surgery, but let me be clear...This is not his viewpoint. He also stated that area in question is basically microscopic at this point. Geoff asked about lymph nodes and my surgeon stated that all the local lymph nodes were eradicated so they shouldn't be a concern either. It was a good thing Geoff called back b/c now we both feel much better!

Distractions and Drama

Today is going to be one of those days...I can already tell.

My mom left yesterday before E's nap.

After E woke me up by throwing up all over the both of us and my bed, I gave him a bath. When Geoff came home from work E was still in the tub and E threw up a little again. We got him cleaned up and I figured this would be the end of it. No, I was wrong.

Geoff fed him dinner and shortly after...it happened again. Geoff decided that based off our current situation urgent care was probably a good option. He offered to go with both kids by himself, but at the time Ella was overtired and screaming bloody murder. Even though I had no interest in going, I decided it was in the best interest of everyone if I went along to be the "stroller pusher."

So away we went. E got a full exam in urgent care. Did I mention that he was the happiest, most charming version of himself? Telling everyone "please," "thank you," "I'm sick...my tummy hurts...giggle giggle," and my personal favorite (I'm NOT sure where he picked this up from, really) "ya, I'm here cuz I puked." If I were his nurse I would have left the room, giggled, and decided that kid did NOT look sick. 

So back to this full exam. He had his ears examined. One looked fine and the other had a lot of wax, but it seemed fine. He had his throat examined. It was fine. His lymph nodes, fine. His belly, fine...and on and on...When the exam was done, the MD started to talk and I could tell this was going to be the 24 hour bug talk, so I just sat back to listen. He told us that he ruled out appendicitis and testicular torsion and I almost burst out laughing, "you think?" I mean I know vomiting is associated with both of them, but a sing-songy little boy who is trying to climb everything...I guess those options were never in my differential diagnosis.

Did I mention that I was crabby? Ella was asleep in her stroller and I was wishing I was curled up and asleep too. I felt the whole thing was silly and all I could think about was that it was way past E's bedtime and that I wanted a heat pack.

In the end it was decided that E should have half an oral dissolving Zofran tablet (medicine for nausea...pretty much the same med I take, except I take the pill form). He took his half reluctantly and then declared it tasted "fruity." He thanked everyone for making him "feel better," told us he liked the hospital because they were really nice to him and we went home.

When we got home he thanked us "for making me feel all better" and declared he was going to bed. He gave Geoff kisses (I was in our room at the time) and he went to bed. That was it.

I crawled into our bed and Geoff put Ella in with me. She wasn't asleep at this time so we watched a little tv on hulu together until she fell asleep (she frequently cuddles with me if I do this and goes to sleep...it works so I don't question it).

So back to today...No progress was made around the house last night. All laundry that was done was related to E being sick. Dishes were left in the sink instead of being loaded into the mostly empty dishwasher. Geoff took E to preschool and then Ella to daycare and called to tell me that he forgot diapers for Ella (since we use cloth diapers he takes what we need each day). I suggested buying some disposable at the Walgreens a few blocks away and he acted annoyed with me. I guess that was not the right response.

Geoff is frustrated, frazzled and still extremely over-tired. I'm not exactly sure what to say because I'm walking a fine line with him. I want to help him, but I don't want to insult him.

Personally, I just want to sleep, but I have homework to do. Also I know I can be demanding so I'm trying to be mostly self-sufficient. This way I can have my blankets all exactly the way I want them because I do put them that way myself. I figure if I take care of myself then Geoff doesn't have to worry about me too. This is what I tried to do in the hospital too and it seemed to work.

If you remove all of Geoff's overtired frustration from my life, the biggest frustration I have right now is that I can't fine one of my cats. I know she is here, I've seen her once since I came home, but usually she is by my side and I can't find her for the life of me. She is one of my main napping/homework buddies so my world just doesn't seem right without Petunia. Also, I'm worried that she's hiding because she is hurt. Probably though, she just found a really good hiding spot and it trumps cuddling with me for now.

I have other cats that are more than willing to take her place. Right now in fact I have a cat sleeping on each side of me. Really the answer seems to be that I should just nap and let the world resolve itself, but alas, I can't. Also I have a strong urge to knit (insert giggle here b/c I barely know how to knit), but knitting and watching a movie seem like a really good idea right now. They seem like appropriate post-surgery activities. Homework doesn't. Oh well, I'm not normal and neither is my life. Time to hit the books before everyone comes home with their distractions and drama.

The hospital

I'm back and ready to blog again. It's going to be a long one...

So, I'll start at the beginning. The night before surgery we were up late. I was working on a paper for school and Geoff was helping me by reading through things, etc. Finally I decided I couldn't see straight anymore and emailed the professor. I decided I just didn't care that much. She emailed me back in the morning and told me to take until the end of the week. I'm going to get back to work on it as soon as I write this.

Tuesday morning I got up a little after Geoff to help him get the kids ready for daycare. I made the mistake of telling E the night before that I was going to go to the hospital and not going to be home for the night. It seems that I frequently underestimate what he is going to understand/remember. He was very upset about going to daycare and even more upset because he knew I wasn't going to be home when he got home. There were lay down on the floor style temper-tantrums. It was a mess!

After Geoff and the kids finally left, it was just me and the pets. I figured I would take a nice hot, leisurely bath since this would be something I wouldn't get to do for awhile. So I started the bath (oh and yes, the bathroom is still a mess, but there are towels and bathmat down and I'm pretty careful...) and then decided to straighten up E's room. Straightening up E's room led to me changing the sheets on his upper bunk. Then I decided I should charge batteries in his Twilight Turtle and other toys just in case. I don't remember what else I did, but suddenly Geoff called to say he was on his way home to get me and still hadn't taken my bath.

So I took a quick, hot bath (I added hot water) and ran around to get ready. I packed enough crap to last me for a week, but I figured it was better to have what I need than to have to keep bugging Geoff to bring me something else. I left most of it at home and had him bring it to me after my surgery. The only things I took with me to the hospital initially were my cell phone and my iPad, but I even sent the iPad back home with him (I know how frequently those bags of belongings get lost...).

On the way to the hospital we dropped the coonhounds off at the kennel. I miss them and I hope they come home tomorrow, but this has been much easier for Geoff. Wilco, our weiner dog, stayed at home because the plan was he would go home with my mom (which he did today).

When I got to the hospital we headed to first day surgery. I only bumped into one person I used to work with. At first day surgery I did the standard urine sample, changed my clothes, had my vitals taken, talked with the anesthesia team, talked with my surgeon, signed my consent, had my port accessed and then was promptly wheeled away. As they were wheeling me away I was given some Midaz (a drug) and they laughed and said I wouldn't remember anything past first day surgery.

I remember the sad and worried look on Geoff's face...I think he would have done his 50 good-byes had he had the chance. I remember leaving him. I remember getting out of first day surgery and going down the hall outside the ORs. I actually remember getting into the OR itself and thinking it was a lot smaller than the Cardiothoracic OR (I think), but that is the end of what I remember. That was before 1pm on Tuesday...

I have no clue what time I arrived in the recovery room, but the first time that I noticed was almost 6pm. By that point I was almost ready to go to my room. I know that I asked for nausea meds in recovery, but that is the only thing I remember. Once I got to my actual room, I was told I had 1 mg Dilaudid in the recovery room for pain, but that was it. I opted for a little more Dilaudid when I got to my room, but it made me pretty nauseous, so that was the last of that. My surgeon came to say hi/check in on me shortly after I got to my room. He was pretty proud that my surgery only required one port (aka I only needed one incision).

This incision was done directly inside my umbilicus, or belly button. Initially, I had a tegaderm (clear dressing) with a folded up gauze pad over my incision. My stomach was very distended because of the gas they put in to do the surgery and overall I was very puffy from the fluids and even more likely from being inverted for hours as they did the surgery.

Geoff showed up at about 7pm. He brought all my bags. The most important was my super cute monogrammed "31" bag filled with magazines, lotions, colgate "wisps" of every flavor, hard candies, facial cleansing wipes, grippy socks, good luck omens of all sorts. Almost every single thing in the bag, including the bag itself, was a cancer gift from friends or family. I felt really pampered and loved just bringing that bag. I also had my computer bag and a bag with a change of clothes and my own quilt/pillow. In addition to all that I packed, Geoff showed up with some beautiful tropical flowers and a wiener dog balloon (something isn't working between my phone and blog or I would include pics)

Geoff set everything up in my room so that it was convenient for me and then hung out for the rest of the evening. He also helped me changed into my own clothes. A few friends/previous co-worker came to see me before 8pm and after that everything for me is kinda fuzzy. I slept most of the evening. Before Geoff left I decided to attempt my first walk and walked from my room to the nurses station and back (my room was the 2nd to last in a hallway).  I slept most of the night. Of course I was woken every 1-2 hours, either by my need to go to the bathroom or for vitals or for my weight or something else. At some point around 4 or 5 am I woke up to go the bathroom, went for another walk and crawled back into bed. As soon as I had tucked myself back in bed, positioned myself, tucked in heat packs, the NA (nursing assistant) came in to get my weight. I asked her to wait until next time I had to get up. She said fine, but she and the nurse woke me up less than an hour later for the weight and a heparin shot.

I was mortified to see that my pre-op weight and my post-op weight differed by the addition of over 5 lbs. At the same time this was not surprising if you saw what I looked like. After the weight, I went to the bathroom again (I did this a lot with the IV fluids). Once I got myself back in bed I realized I was feeling really nauseated again. By this time I had been trying to take Oxycodone for pain. I called for nausea meds, but before anyone could have even got to me I was sick a good 5+ times. Luckily Geoff had positioned the appropriate bucket close to my bed so I could reach it. After I had the nausea meds I went back to sleep again. There was a resident that came by to see me and I decided I should get up and get moving before everyone rounded on me.

I got up and brushed my teeth, washed up and went for another walk. Then I had another friend/former co-worker that stopped by to visit for a bit. I never actually had the whole team round on me, typical UW style, but I'm not surprised...I um, sort of asked for as few residents as possible and my wonderful NP knows my whole resident post-Ella's birth story so she was kind enough to oblige.

At about 8am my wonderful NP rounded on me herself. I talked to her about the nausea and feeling like I couldn't take any pain meds. We decided to try 800 Ibuprofen with Tylenol in between doses. She told me I could try whatever I wanted and she would work with me. She also said she had somewhere else she had to be but she would check back in a few hours and see how I was doing. So I tried the Ibuprofen with oral Zofran for nausea. Within an hour I felt like a different person. My wonderful NP also said I could ditch the stinking IV fluids, so I was a pretty happy person by the time she left.

My nurse and my NP both joked about hiding out in my room bc it was peaceful and "not crazy." They were right. I was debating asking to stay just because I knew going home would be nuts! Geoff and Ella showed up around 10 am and I figured I would get a taste of going home by having Ella in my room. She proved me wrong. She was extremely somber and wouldn't talk to me. Then my breakfast tray arrived and she ate 1 of my 2 pancakes. After that she would talk, but that was mostly to share my yogurt with Geoff (I had no appetite yet). Shortly after eating she fell asleep and stayed asleep until we left. She was amazing...Ok, my room was amazing. Did I mention that I had a great view of the lake from my room? It was really nice...

Anyway, since the Ibuprofen/Tylenol combo worked with the oral nausea meds, I decided I was ready to go home. My NP came back and wrote my discharge orders. We decided on a script for Norco (another narcotic) for sleep and such. I've been using it occasionally and it is working much better than the Oxy did for me.

It took longer than it needed to get out of the hospital bc once again pharmacy didn't send up the appropriate heparin flush for my port for hours. Like 3 hours. I'm not kidding. I met with everyone I needed to in the meantime and signed all necessary paperwork. Eventually we left. Oh btw, my port worked beautifully the whole time I was there...Anyway, so we left. I reluctantly agreed to a wheelchair ride out. I convinced the NA to drop me off at one of the benches outside the hospital as Geoff took our ticket to the valet. My favorite valet saw us immediately, took the ticket from Geoff and RAN, literally, to get my car. He is amazing!

Once I got home, I loved on E a bunch. Talked with my mom a little. Loved the flowers she got for me, took a shower, and went to bed. From that point on, I mostly slept through to today.

Today I got up to help Geoff get the kids ready, but it's interesting how to help right now...both kids tend to get easily distracted and require being picked up at some point and I can't life them at this point. I'm technically not supposed to life either of them or anything 15+ lbs for 6 weeks, but my wonderful NP said we would reevaluate at my appointment in 2 weeks. I also can't swim with them, bathe, etc. I am REALLY REALLY glad that next week is Thanksgiving and a short work week because I have no idea how I am going to do this otherwise.

Ella does not understand me not picking her up. E does better with it, but...my mom left after noon today. She got E home from preschool, made lunch and tucked him in for a nap. He wanted to sleep with me and I though it seemed fine. We slept most of the afternoon and then he threw up all over me. Many times. I'm pretty sure I never actually lifted him up as I was getting us cleaned up, stripping the bed, helping him in the bath, but it was hard to resist picking him up.

Geoff and Ella came home while E was still in the bath. Geoff put clean sheets on the bed and took care of everything else so the house is back the way it should be. E and I are in our pjs and cuddled up watching tv and relaxing. Ok, a few more minutes and I need to get back to reality...school work.

Overall though, I'm doing better than I thought I would. I still need help with the kids and I need to take it easy, but otherwise I almost forget that I had surgery.

One more thing...so I'm allergic to adhesives. When I took the dressing off last night before my shower I had large unpopped blisters all around my belly button. Of course, I know better, but I couldn't resist and popped them all. Just thought I would share this...

Oh, and one more thing...I'M DONE!

Back home

Geoff again.

Surgery went very well. It took the better part of Tuesday afternoon. I had to pick the kids up from daycare, drop them off with Grandma, and then headed to the hospital. By the time I got there, Gin was out of recovery, back in her room, and reasonably lucid. She did drift in and out of sleep for most of the rest of the time I was there. I did get to tuck her in for the night before heading back home to make sure Grandma was handling the kids OK (she was, and had them both to sleep).

This morning Ella and I headed back to the hospital, with high hopes of springing Gin out around lunchtime. Most of the morning was pleasantly uneventful. We saw our favorite NP a couple times, and she went over how well the surgery went, and what the next steps are. Gin has a follow up in a couple of weeks, and is on restricted duty for 2-8 weeks. I know that is a ridiculous range, but there was concern from all parties about how to handle light duty with two small kids, so there might be some re-assessment if signs point to a quick recovery.

That's about all there really is to report. Have a good night.

You are going to pull it out through what?

Hi gang, this is Geoff.

So tomorrow is surgery. It feels like people (including ourselves) have been lowering our expectations in regards to the severity of the surgery. Originally it seemed like some insane thing where Gin would be in the hospital for a week and be unable to lift the kids forever and our lives generally sucking (this was back in the days when it was going to be a radical hysterectomy - remember those?). Now, it sounds like something on par with an appendectomy. She'll be home Wednesday (fingers crossed). They are taking it out through her belly button (more on that in a minute). No biggie. If we still did triathlons, we could be doing one this weekend as a cute couple in stupid costumes with signs saying "cancer sux" or something like that. OK, the triathlon thing is certainly an exaggeration, but it shouldn't be terrible, except that...

1. We are both tired. Like, completely depleted, exhausted, tired. I can't overstate how tired we both are. This is not a great way to go into any surgery. This is not a great way to go into anything. Is it weird that I wonder if being knocked out for surgery kind of works as a substitute for sleeping (ie, does your body do REM sleep during anesthesia)? If so, I am kind of jealous of Gin, because she will have a four hour nap forced upon her tomorrow afternoon. OK, I'm not jealous at all, because...

2. It is still surgery. Neither of us reacts well to anesthesia. Gin has never really had surgery. All of these things add up to normal surgery worries.

Anyway, there is a bunch more stuff you can probably think of, and you can quibble if that last one should really be three different things. I don't care.  Do you remember the first point? I'm really tired.

So about removing a uterus through a belly button. This seems even more spacial perplexing to  me than giving birth. Plus, the image (I couldn't help myself) is really kind of gross. Honestly, the first thing that came to mind was Egyptians pulling the brain out the nose when mummifying someone. Totally inappropriate.

Now for something completely different, thank you all so much again for your well wishes and prayers. I'll try to get on tomorrow night to let you know how the surgery went.

Brief

I'm really not sure what to write about tonight.

Today we went to my parent's house. It's only a few hours away, yet I haven't been there for months. We didn't do anything terribly excited, but it was a nice day. Well, if you choose to overlook the fact that the kids skipped naps and were exhausted by the time we left. Oh and there is the part where we made it less than 2 miles from my parents before E threw up all over himself and required a parking lot pj change. Other than that though, it was a great day.

Even though I dropped a class yesterday I still have an excessive amount of homework to do and both Geoff and I are exhausted. On that note, I think I am going to keep this very brief tonight and go to bed...more tomorrow.

The new plan

Alright I'll admit it, I've gotten in the habit of skipping Friday nights. It's less about me feeling uncool sitting at home, writing a blog post on a Friday night and more about the fact that I'm almost always too exhausted so I declare that night my official break.

Continuing with a theme of exhaustion, I have decided for the first time in my 10+ years of college (5 for my first degree, 2 for my ADN, 2 for my BSN, and another 1+ for my MSN) that I need to drop/withdraw from a class. I gave it a couple days thought, but honestly I was struggling to keep up with everything. I've been going to school full-time through all of this and I really am exhausted.

I didn't want to drop any courses mostly because it meant delaying "Clinical Bound." CB is a one week intensive training that my school requires us to do before starting our clinical training. I was scheduled to go to CB in this upcoming January. I had most everything worked out. I was carpooling with someone else that goes to my school from MN. We were going to pick up another midwifery student/friend in Indianapolis and then the 3 of us would drive to our school in Kentucky together.

My friend from Indy has been an instrumental support through much of my cancer treatment (she and her husband have even driven to come to visit us/cheer us up) and I wanted to go to CB with her more than anything. I knew she would understand, but I still feel like I'm letting her down. In addition to her, I have a Nurse Practitioner classmate that was also going to be at CB at the same time. She also has been a major support for me. She has even sent cheer-leading/support cards to Geoff. Now I won't get to see her either (though I have promised her that I will see her at some point...I owe her many hugs).

I found all of this to be extremely depressing. For the longest time I wouldn't consider slowing my education down for these reasons. At the same time, I feel like I'm drowning and I was having visions of getting back to my hospital room after surgery and having to try to write a paper or read some journal article. Originally I asked my instructor if we could work something out, but when she called me to talk about it, I realized I just wanted to drop the course. Otherwise in the next 5 or 6 weeks I still had 3 more exams, a case study, multiple forum posts and to review someone else's case study.

As soon as I gave consideration to dropping the class, I felt like a better mother, wife, student and I realized I could take so much better care of myself. This means I can sleep. It also means that next term I really only have to take one class, though we'll see about that...

As far as the missing out on being with my friends...I looked up the April CB dates to see when they are and who was going. I realized another couple of my friends were scheduled to go in April, but on different dates. At first I was torn, then I decided to be completely selfish and send them messages to see if anyone would consider switching so we could all go together. Within hours, both of them had replied and now we are all tentatively going together April 18th-25th (don't tell anyone the last day is my birthday). I'm really excited!

Finally as a solution to not getting to go to CB as planned, I've decided to try to make sure my clinicals still work out so I am able to attend graduation next October. Some of the midwifery students I should get to see at the American College of Nurse Midwives conference in Nashville next summer, but I want to ensure that I get to see everyone. I have no control over how many babies will be born when or who/what my office visits will be, but I'm going to do whatever I can to still finish by next October.

One last note...all of my instructors have been amazing through all of this. At the same time, they are constantly encouraging me to take an emergency academic hiatus. I've reassured them (hopefully adequately this time) that I haven't ruled the possibility out, but I am not interested in doing so at right now (just as I did last term). I was talking about this with one of my old roommates today and she laughed and asked "Do you need me to call them and explain how you work?" It's true. I keep telling them that this is what gives me focus and drive, but they don't get it. This is how I work. I thrive on having a full plate, though I am looking forward to slowing down in a few years (probably after I'm done getting my family practice NP and my DNP...about another 2 years total). Afterall, we aren't going to be having anymore kids now.

Tumor Board 2.0

I'm really tired so I'm going to cut to the chase.

The consensus at tumor board was that according to the MRI, I am cancer free. Once again, yay! Unfortunately they did not all agree what to do with me.

The votes were 4:2 against surgery.

Of the 4 against surgery, 1 was my radiation oncologist. We already knew this is how she felt. Another felt that when there was "the spot on my cervix" they should have biopsied it to ensure it was still tumor and then done surgery asap. Another felt that I should be watched closely with scans every 2 months and if anything is questionable, biopsy under anesthesia. The final vote against surgery wasn't strongly one way or another but felt the recommendation against was fine.

Of the 2 for surgery, 1 was my gyn oncologist. He feels pretty strongly about this. Strongly enough that if I don't have the surgery he thinks it would be best for my next appointment if I were to consult with one of his colleagues who recommend against.

The problem is...there is no evidence either way. No one really knows what to do.

Reasons to not do the surgery is that I might never have a recurrence, thereby making surgery unnecessary. No chance for an operative/post-operative complication without surgery. Finally I get to keep my already fried and non-functioning girl parts.

In theory if I have the surgery it should reduce my risk of recurrence (but of course it is not guaranteed). Another point for the surgery is that apparently after radiation there is a window of opportunity for surgery before scar tissue starts to set in and my pelvic organs begin to meld with one another. If I wait to have surgery until later (because I change my mind or I have a cancer recurrence) then it would most likely be a more difficult surgery with a higher risk of complications.

While I definitely have a choice, I feel like unless I am told otherwise, the best option is to have the surgery.

I didn't want to choose this, but I don't ever want to go through all of this again. I hated chemo and found radiation to be so degrading.

I've never had anything more than day surgery and while this is only a laparoscopic hysterectomy it is still scary to me. The surgery itself is scary. Being a patient in the hospital is scary to me (plan right now is only one night though) and how this is going to effect my family is scary to me.

Fortunately we have freezer meals, but I think I am going to set up another meal sign-up to help Geoff. My mom will be here for a few days next week to help. We also have daycare on Tuesdays and Thursdays for Ella, but I'm worried about Geoff managing where everyone is, where they are supposed to be, his work load and schedule, and me. Of course we'll get through it, we always do.

If anyone has any suggestions please feel free to let me know here or on facebook...

Other than that we'll have to save my integrative medicine meeting until tomorrow or another day.

Things I have learned from cancer today:

Sleep is invaluable. (I should be asleep).