Mother's Day

Hi, it's Geoff. I'm sorry I haven't written anything for awhile. As I hinted at last time, the next part of the story is not so happy, so I haven't exactly been psyched about writing it. I still want to do it, and I probably will soon. This will just be a short interlude tonight. I can't really sleep, so I wanted to write a little something that has been on my mind this week.

So, as you may have heard, this weekend is Mother's Day. I am traditionally a fairly cynical person about Hallmark (tm) holidays (quick aside, so was the actual founder of Mother's Day), but during the past couple of years, Gin and I adopted a philosophy to take advantage of any opportunity to celebrate, so these holidays do mean something to me (except Sweetest Day, I always thought that one was dumb and never liked it at all). Mother's Day in particular was always a bit of a sore subject, because Gin was always a little bitter (jokingly) that Ephraim was born after Mother's Day, but before Father's Day, so the great fairness meter of life was always a little on my side, because I had more Father's Days than she had Mother's Days. It was one of those jokes just between us. This week, I was reminded that the great fairness meter of life has been a little crappy lately, and thinking about how I'll have more Father's Days than she will have Mother's Days takes something that used to be a fun and now just makes it really depressing.

These holidays are kind of a tricky beast. Remember, Valentine's Day this year was less than a week after she passed away. Not a great day, but all in all, it really didn't bother me. There have been random pieces of junk mail that have been more painful than Valentine's Day. In retrospect, I do think some of that can get chalked up to just being too raw at the time to really take it in.

Anyway, Mother's Day and the buildup have definitely been a little different than Valentine's Day was. I think the biggest reason is the kids. Mother's Day is largely about their relationship with their mom, which lends itself to the question, "So how are the kids are doing?" Easiest answer is that they are doing very well. We talk about Mom frequently, we sometimes get sad (which we acknowledge is OK), but mainly, it is happy stuff. We love watching stuff like the Roar video and looking at pictures of the kids playing with Mom. Which leads to the main point...

There are several people who have asked about how we are handling Mother's Day, and the simple answer is not all that different than last year. The kids still have a Mom, and we are going to celebrate how awesome she is. That never changes. Just to be perfectly clear, I really do appreciate the people who have asked about how we are handling things this year. I appreciate the sensitivity on the subject. It is tricky. I have heard stories of kids getting ostracized at school because they "don't have a mom." Call me ignorant or naive, but this is not something I worry about. A lot of this stems from the fact that we have been lucky, and we are surrounded by a wonderfully supported community.

So we are celebrating. The kids have a mom, and always will. Just because she passed away doesn't mean they were magically conceived out of thin air. One of the most important things to me is that they know their mom. Gin and I talked about the fact that the kids are so young they might not have clear memories of her as they get older. These are the kind of conversations Gin and I would have, and are just as gut-wrenching to think about now as they were to actually have at the time. I want to do what I can to help them remember her. This is everything from how she looked, to her interests, and most importantly, her values.. It is a tricky line to walk, since I don't want them living in the past, nor do I want to keep dredging up painful or sad memories. This is all why I treat these holidays as positively as I can, even as a cynic, and despite the dubiously loaded meaning of the holidays themselves. Ultimately, as corny as it may sound, it is a chance to remind each other that even though she is not here, she is still here. So we are celebrating.

The Best Party of Your Life

Even though it is obvious, I still feel obliged to say this is Geoff. I said I wanted to write some more posts, and tonight it just feels right, almost to the point where I feel compelled to write. Gin used to get like that, where she would say multiple times throughout a given day that she just had to write a blog post because she had things to say and just needed to get them out. Anyway, there are actually about four or five posts I want to write for sure, and we'll see after that. Here's the hard part, the first one takes place over a month ago. It is really a mixed bag for me to think back to Gin's last few healthy days, which is when this takes place. I love the memories, but I miss her so much.

A very special friend of ours talked for awhile about trying to throw us a benefit party. It was a way to draw a close to the season of benefits. We had several other friends who also threw benefits. All of them were wonderful and deeply appreciated. However, this last one will always have extra significance.

What was maybe the most amazing about the last fundraiser is how little we knew about it. Our friend had talked with us and asked us some questions and even occasionally ran some ideas by us, but we didn't give it much thought. Don't get me wrong, its not that we were ungrateful, we just had a lot going on. I think we thought we would get more involved as it became more of a reality.

About the "lot going on" part of that last paragraph, we have to go back a little further. We had many people from our families come and stay with us over the holidays, and overall had a wonderful time. Nonetheless, it was still a lot of house guests, which can be a little draining. Everyone was in a great mood, which certainly made it better. While they were staying with us, Gin was even able to convince her family to dance with us for the music video, which we were not expecting.

What music video you may ask? Well, Gin was inspired to make a music video by another cancer survivor, Megan Kowalewski, who made a music video documenting her cancer treatment to the song "Stronger" by Kelly Clarkson. Stronger actually became an anthem of sorts around this house entirely beceause of that video. After awhile, Gin decided to create her own. Then, it because kind of an obsession. She enlisted the help of our personal guru, our amazing NP from the Carbone Cancer Center. We ran the idea by her, she loved it, and really helped us recruit people to be in the video, scouted locations, and did much of the choreography (or elicited advice from people) herself. At appointments, the NP and Gin would talk about the music video significantly longer than they would about anything else, including how Ginny's health was doing and treatment plans. I don't blame them. It was fun and an nice distraction. Eventually, we set a date to actually do it, and decided to use Katy Perry, "Roar." As you can expect, this also became one of our cancer healing anthems.

We shot a lot of the stuff in the chemo unit at the hospital late in December, and the family dancing scenes over the holidays. Gin's family really was fantastic about being involved. Once we had all the footage, along with some photos we had (most notably some taken during out Relay for Life experience earlier in the year), we again enlisted the help of our amazing NP, who in turn enlisted the help of one of her friends, to edit the thing. To cut ahead, it was finished the day Gin was admitted the palliative care in the hospital. I am so glad she was able to see it. I am very proud of it, and I think it came out fantastic. So, without further ado...

So besides music videos and entertaining for the holidays, what else do you do with your time? Oh that's right, you catch babies, go to treatment, deal with sick kids (and sick you). It was a crazy month. Which meant that we got really excited when we realized the fundraiser party was on. They, we heard some of the plans, and it started to sound amazing. We really realized that it was going to be a bigger deal than we were expecting when we started go see signs popping up around businesses in Madison. It was very exciting.

As the day drew near, Gin was feeling a little run down. It got really interesting the Thursday before the party. She was called for a birth Thursday night/early Friday morning, I honestly don't remember which. The baby was born early Friday morning, she came home, and then had to turn around shortly for chemo treatment on Friday with virtually no sleep. Thankfully her mother was there to help get her to and from the hospital. By the time I got home from work, she looked exhausted. We knew we had this party the next day that we really wanted to go to, but we weren't sure if we were going make it. Even the morning of the party, we still weren't sure. Ultimately, we decided we could go to the party for a couple of hours, and then do home early, preserving nap time and our sanity.

Long story short, We went to the party, and never left until it was closed. It was too good to leave. There was music and dancing, and magic, and food and a silent auction, and most importantly, lots of wonderful friends. It was at the High Noon Saloon, so there was always so much going on. There were kids throwing paper airplanes from the balcony, music going on at the main stage, henna tattoos, and lots more that I know I am forgetting. It was probably the most amazing party of our lives.

And that is what Gin and I spent a good chunk of the night talking about - just how amazing it was. It is unfortunately rare that we get together with friends anymore. Marriage and especially kids seem to have that effect on many couples, so I don't think we were unusual in the fact that we just didn't get out as much as we used to. With that in mind, here was a massive outing, with loads of our friends, all in one place, with fantastic entertainment and food. Again, there was the big stuff like the music and dancers, but there were little things that were fantastic as well. Maybe the best example was sitting in the balcony, watching Ella sneakily climb up on a stool at the bar so she could grab a sucker, and then climb back down. I don't even want to think how much sugar both the kids ate that day. Actually, I don't really care. They had a great time as well.

Gin and I both told each other during the party that everyone should have a party of that magnitude for each person at least one time during their life. We (and especially Gin) felt so loved and supported. Gin said several times during the past year that she never wanted to have a funeral/memorial/burial if she were to die (she also said she understands that stuff like that is more for the living than the deceased, so go ahead and have one if that's what we wanted to do, so I don't feel remotely guilty about actually having one). She also said at the party that the party was in many ways her perfect memorial. There were lots of friends, the kids were there, and we had a fantastic time, but unlike a normal memorial, she got to be there as well, and that is what made it the best type of memorial. Don't get me wrong, we didn't think it was depressing like a memorial or anything (I feel like I'm making it worse).

A better way to describe it is that the party was a celebration of life. Gin was very much alive that day, so it could be a pure celebration. I really do hope everyone gets to experience something like that.in their lives, because we left that party feeling so special. We both said the fundraising objective of the party was completely irrelevant, we loved the friends, family, and support that we received. In retrospect, what made it even more meaningful is the fact that it turned out to be Gin's last healthy day. On our way home, she admitted that between the birth, chemo, and the party, she had overdone it. We planned on her going to be as soon as we got home, but on the way home she seemed to keep getting quesier. Shortly after we got home, Gin started throwing up. It was fast enough we initially thought it was food poisoning, but it later proved to be the point where her health really turned for the worse.

Still, I can't help but feel amazed by it all. How many people get to have something like that party thrown in their honor? How many people get to enjoy their last healthy day on this Earth with an epic party? Seriously, that's just bonkers. More than anything, I feel so blessed to be a part of it all.

I'll warn you, the next few posts are going to be a little rough, but I want to share some about how she was doing and how she was feeling at the end. As always, thanks for your support. Much love!

Update

Unfortunately, this is Geoff. I know you want to hear from Gin, and I know a lot of you are curious how Gin is doing. Long story short is not well. She has been steadily and quickly declining all week. Chances are she only has a couple of days left. Of course we're still hoping for a last minute miraculous turnaround, but it doesn't look very likely. Yesterday, I found myself hoping more, for the first time, for an easy passage. We have always been so optimistic, even when the odds were very much against us, that this shift felt like a betrayal. She declined more over the night, and this morning her breathing is noticeably more labored and her heart rate was up. Today it doesn't feel like a betrayal. She is anxious and uncomfortable, and there's not much any of us can do for her here. 

I still read her your messages and she likes that, as well as the visits.I take joy that the kids were able to come visit Wednesday night, which turned out to be her last really lucid night. I take joy in the fact she earned her degree yesterday and finished school. This is something she wanted so badly and was so excited to find out. There's so much more I want to write, and there will be time for that, but right now I want to be with her, so I am going to wait on some of the other posts for later. Thank you for all your messages and prayers, they mean the world to us. Please understand if I don't respond, it doesn't mean your message wasn't read or loved, I just don't have time. The guy who never used Facebook is trying to keep up. You are all wonderful, and this celebration and outpouring for Gin kind of overwhelming. Much love from both of us to all of you.

Kevin

This is going to possibly one of my hardest and most important blog posts I ever write.

Many of you know me in some sense or another, but not all of you know my family. Sure I talka bout Geoff and the kids all the time. I frequently mention our zoo and occasionally mention my parents or neice, but rarely do I mention anyone beyond that.

In reality this might be fine or normal for other people, but for me and my family this is actually an injustice. Kevin is really important in my the life and the life of all of family. He calls us nearly daily and hopefully will someday live by us. I guess I should explain...

Kevin is one of my two older brothers. There are three of us total. We are all 5 years apart and Kevin is the middle child. He has always been a part of my life and always will be. I've never known anything else. For me this has been both a blessing and curse. Ok, yes, all brothers are a blessing and curse to some extent, but Kevin is different. Really different.

I'm his sister and I've never found the right way to describe my brother. One Dr. described him as Swiss cheese...you can be on the same plane with him and both having a meaningful conversation and then suddenly you fall through a hole. Others have described him as Forest Gump-like. Personally, I hate that description, yet I found myself using it yesterday. I actually walked out Forest Gump in the movie theater because it was too hard for me to watch, esp. when I heard giggling and my brother's name in the movie theater.

There have been many other descriptions of Kevin over the years and if you are getting the just of where I'm going with this, many of them have not been nice. That's just how it is, kid's aren't nicked sometimes, parents aren't nice.

I often wonder how different things would be if Kevin had something socially recognizable like down-syndrome. Would that have made him more socially acceptable? Would the characteristic visual appearance allowed people to associate him their perception of people with down-syndrome as sweet little puppy dogs?

Even though I was five years younger than Kevin, I grew up defending him and beating other kids up for making fun of him. I won't lie, I was glad for a variety of reasons when Kevin went to junior high and we were finally in separate schools.

That's how my life with Kevin is...it's full of love, embarrassment, anger, frustration, compassion, and hurt. I can't speak to what his life is like.

As I previously mentioned, I was describing Kevin yesterday. I was at chemo and talking with my beloved NP. We grew up close to each other and we were talking about people we knew when we stumbled on a mutual contact. Next thing I knew I was explaining my relationship to this person. I had no problem explaining it was someone I knew because of my brother. That was simple enough, but when I actually had to say who my brother was, I hesitated. Then I found myself explaining myself. Enter the guilt.

It's just that it's hard to mention Kevin without an explanation. It's even harder because Kevin knows EVERYONE! He is a social butterfly. While, I tend to think of myself as an introvert, Kevin is the polar opposite. He'll talk to just about anyone. He loves to be a part of social gatherings and he's always on top of the latest gossip.

In fact I sometimes think that's why I'm an introvert. It's a coping mechanism, because I live in fear of what and how much everyone else already knows about me. It's a blessing and a curse.

Again, I love my brother. There is so much I have learned from growing up with someone who dances to a different drummer. In reality, if everyone had a little Kevin in their life and had the patience to appreciate his gifts, the world would be a better place.

No one has a great explanation for Kevin. The general consensus is that he had anoxia, or lack of oxygen, at birth. The midwife in me says he was a big baby and probably the victim of shoulder dystocia or cord compression when he was born. Today either of these would pursued by the insurance company for malpractice, but in 1972, our society wasn't nearly as litigious.

None of that matters because that isn't how our parents are. They have never looked for someone to blame instead they had always strived to find an understanding so they could help Kevin be the best he can be. They were to told to institutionalize him as an infant and refused. They were told he would never read or write or do math, and you know what, the experts were wrong.

My parents, especially my mom has dedicated her life to making the world a better place for Kevin. She worked carefully with his early childhood and special education instructors when he was younger and fought major battles to mainstream him as he got older. She is basically my hero. She went above and beyond to find methods to teach him at home and to balance being himself and "fitting in" as much as possible.

Meanwhile she dealt with endless slack from me because I didn't always understand why she didn't focus all of her efforts on making him fit in. It would have made my life easier. It was hard having birthday parties, esp. sleepovers when your friends don't understand and therefore, don't like, your brother.

Again this is where we could all stand to have some Kevin in our world. Kevin is fun and unique, but it's taken me a long time and a lot of maturity to appreciate that. I won't lie, I still don't always. We still fight like cats and dogs at times.

I don't understand Kevin's world and he doesn't understand mine. Currently one of our hot spots is him telling me how hard it is to have a sister with cancer. I know he's concerned and I understand all that he has at stake (more on that later), but I've explained that I can't be his main source of support and needs to talk to someone else about his frustrations. This makes him very angry with me because he thinks I'm being selfish and inconsiderate. He doesn't understand my perspective and I don't think he ever will.

At the same time cancer has turned his world upside down. Maybe more than everyone else's. My dream home has always included a separate apartment for Kevin. This way he can be close and I can support him in the ways he needs support, but we can all have the privacy we crave (as social as he is, Kevin very much likes his privacy and space). Unfortunately thanks to cancer we have no idea how it will all turn out.

In the meantime Kevin lives at home with my parents. He drives, he works, and in many ways he's independent. In many other ways he isn't.

Driving...that's actually a funny story. Our parent's never put Kevin in drivers ed or planned on him driving because they weren't sure he could handle the responsibility. Kevin didn't approve so he registered himself for driver's ed. He pleaded his case to our parent's and got their consent to take lessons. He got a very hesitant "we'll see" to him actually getting his license so he paid to use one of the driver's ed cars for his driver's test and had one of his instructors drive him and next thing any of us knew, Kevin had his license.

This is just how Kevin is. Just when you think you have him all figured out, he shows you. He really is a character.

Oh, and our parent's weren't trying to be mean by not letting him get his license. The opposite actually...they just weren't sure driving was a good idea with the temper tantrums and emotional instability that are unfortunately a part of Kevin's world. Don't judge, who knows what you would be like if you were chronically overshadowed, picked on, and dismissed the way Kevin is...even by his own family, at times.

I probably struggle with Kevin more than anyone besides my parents. I always want to make him happy, but sometimes that doesn't coordinate with my own expectations of situations. I want him to feel included and to be able to be himself, yet I hate the embarrassment of having a brother who talks a little too loud, stares a little too long, asks too many questions, or talks about things that I might find taboo.

It's made it hard with friends and even harder with family. I have plenty of family who don't understand my relationship with Kevin. It's easy for others when they aren't in as deep and don't see the whole picture.

The reality is I'm always trying to balance in a little relief for my parents, who have never been empty nesters and making Kevin feel special. Geoff and my wedding was actually Geoff, Kevin's, and mine. Geoff and I got married in Door County, WI. One of Kevin's favorite places to visit. We had a weekend-long party and planned special events such as hiring out an entire performance of a play because it had significance for Kevin. Our weekend served double duty. It was special for us, but equally important, it was special for Kevin.

Our children are both actually named after little towns in Door County. That was mostly us, but a little for Kevin too. It's given him great pride. He loves E and Ella like no other and I have vowed that I will do whatever it takes to bring my children up realizing what a gift they have in their Uncle Kevin. Right now it's fun because while Kevin is an adult, but he has a childlike innocence that only the kids can relate to.

Assuming I'm feeling up to it, we are hoping to take a road trip to Colorado/Wyoming in late May. We want to take the kids to Mt. Rushmore, Yellowstone, and visit my god-mother. We decided on this as a vacation because then we could also take my parents and Kevin. At first Kevin said he didn't want to go and I was crushed because I wanted him to have this vacation with my kiddos. I have grand plans of making photo memory books and making it a vacation for all to remember (in a good way, of course).

And this is it...this is who I really am. I'm constantly balancing my needs with the needs of my family...and that family includes my brother (I love my other brother too, but he has his own life and his own family...). Kevin is a huge part of who I am. I want to share him with you because he is special in so many more ways than anyone can imagine and even I don't always appreciate that. I'm ashamed that I get embarrassed and don't always openly embrace him for who he is.

And if you ever meet him and want to know some of his great loves beyond Door Co. and gossip...he loves theater (he has season tickets to his local performing arts center), basic history, art, and coffee.

Oxycodone

While I was sick a few weeks ago I mentioned that I needed to increase my pain meds. I normally take a medication known as Norco, essentially Vicodin, for the bone pain caused by chemo.

When I got some viral bug that caused overall body aches and pains in addition to the bone pain, I quickly became severely uncomfortable. I usually take 1 Norco at a time and only on my bad days do I need another in 4-6 hours...very rarely I'll take 1.5.

Suddenly I found myself taking 1 every 2-3 hours (this works out since I can take 2 every 4-6 hours). Unfortunately my pain was still through the roof and I was exceeding my daily Acetaminophen dose. Acetaminophen is Tylenol, which is toxic to your liver in not so large doses.

I knew the easy version of the next step up was Oxycodone. I've dealt with all these meds many times as a nurse and I know many patients do fine with it, others do not. Personally I tried it after my hysterectomy and every time I tried it I would get violently nauseated and throw up. After a couple times, I asked for Norco and ever since then we have had a happy relationship together.

The fact that I was willing to try Oxy again was an indication alone to Geoff about just how bad it was, but we both completely agreed I needed to try something else. A day or two before, we had been in the car running an errand when the pain took hold and I started writhing. I had my last dose of Norco within the last 3 hours and it didn't matter...every bump, twist, turn, stop was excruciating.

I, like many people, hate "the pain scale"...you know when you're told to rate your pain on a scale from 0 to 10. As a nurse, it is a useful tool at times, as a patient, it is crap. After being a trauma nurse I found myself telling people to think of 10 as being hit by a truck. I've never been hit by a truck, never want to be, and have seen first-hand what it looks like, so I tend to rate my highest pain as a 5 or 6. On this car ride home I told Geoff through the clenching and sobbing and attempts at deep breathing that my pain was an 8.

So that was it. I asked for Oxy.

Geoff had to drive into Madison to the hospital to fill my prescription, but I didn't care. I wanted it pronto. I was convinced it would help.

In all honesty, I think it did. I was able to sleep which I desperately needed, but then the nausea kicked in. Quickly I was taking everything in my arsenal and nothing was making it better. I didn't care, the pain was better. I kept taking the Oxy. Then the lack of appetite kicked in. Nothing appealed to me or if it did, I would have one bite and never want to see it again. I kept taking the Oxy. Then the constipation  set in. I still didn't care. I kept taking the Oxy.

I mentioned here before that I was essentially in bed for two weeks. I had fevers, pain, and was generally miserable. Once the fevers stopped I still felt miserable for days. Eventually I realized it was the Oxy and it was time for it to go.

I had the prescription for Oxy filled two weeks ago on the Friday that I took a break from chemo. I hadn't taken all of it, but because it was such a potential pain to get filled I asked for a refill the following Friday. It was the next day that I realized it had to go.

I still used one or two for a couple days, but I noticed how much better I felt when I was just back on Norco. I would find that I could eat a little here or there which would help greatly with the nausea and my mood. Let me just say I'm not pleasant when I'm hungry, but nauseous, and uncomfortable.

Part of the reason I had been taking the Oxy was hip pain. My hips are where I tend to get the brunt of my bone pain (this makes sense), plus I'm a side sleeper. My hips felt like they had been run over by a Mack truck. I was living for heating pads and pain meds. I couldn't get comfortable. I was starting to wonder if I was getting pressure ulcers. So again, I started weaning off the Oxy and I found myself up and about more and off my hips. Voila! Less hip pain.

It took a few days of being completely off it for the nausea to go away and my appetite to mostly return. It took a few more days for the constipation to go away and the rest of my appetite to return.

Now I hope to never need it again on a regular basis. I'll keep a tiny stash locked up for break-through pain, though I'll hope I never ever need it. I've debated using it if I ever get really bad diarrhea from chemo again, but I don't even think that's wise. I just don't think Oxy and I are made for each other.

I found myself dreaming that instead our insurance company would pay to upgrade our bathtub to something a little bigger with jets. For me a hot, Epsom salt baths are so much more therapeutic, but I guess that doesn't support big Pharm and societal drug addictions (sorry I just couldn't resist that). Maybe someday I'll start a non profit that pays for bigger tubs for cancer patients...for now though, I think I'll just try going back to sleep.

3:20

It's 3:20 in the morning and I should be asleep...or doing something really cool. This makes me think of my younger, wilder days and going to Panama City, Fl where bar close was something like 4 or 5 in the morning. It seemed so great at the time and now I don't have any understanding of the appeal.

I'm awake because I slept through chemo and most of the evening until 1:45 am. When I came home from chemo I went straight for a long, hot soak in the tub. I paused only to turn on my heated blanket and pre-heat my heating pad. As soon as I was done I crawled into my heated cocoon and slept.

The kids came and gave me good night kisses and tried to read bedtime stories near me, but I was barely able to stay awake for books...

Geoff was still up cleaning when I woke up at 1:45. I think he said he was doing some laundry and starting the dishwasher, but when he heard me up he immediately switched gears. He made me food and we watched a couple episodes of a series we have been cramming in off netflix. Then he crashed.

Now I wish I were asleep because morning will be here all too soon, but I'm wide awake and all too aware of all things I've been pondering blogging about this week...

First of all, the major debate courtesy of the New York Times (and the Guardian, though I didn't actually read that article myself befor it was removed) about the mother with stage 4 breast cancer that shares her experience with cancer publicly via her twitter account. For those of you that haven't heard about this, it's been a topic of discussion this week on NPR, and the cancer world. Essentially there are people who feel that in order to "battle cancer gracefully" you need to do it quietly without the use of social media.

Of course, I'm going to guess that all of you can figure out my bias on this debate. I have heard these arguments before, even amongst our own families. It annoys me and while I'm wholeheartedly supportive of everyone being entitled to their own opinion, I'm also wholeheartedly supportive of everyone handling these delicate situations in whatever manner they are most comfortable.

I started this blog as a means to update everyone. I hate being bombarded with phone calls, text messages, emails, etc. asking for updates. I thought this would be an easy way for everyone to find out how I'm doing on their own time and to their own level of commitment. Before I was even done with my first post I realized it was also therapeutic for me and a great way to share my journey. I've said it many times before, most of my friends haven't had cancer and many of them have been fortunate enough to not have been through with a close relative (yet). I say yet because statistically speaking many of you will go through a cancer journey with someone else close eventually. My blog is a way for me to share my experience and maybe help someone else in the process.

It annoys me that there is a large debate about whether what I am doing is inappropriate. This is what helps me and how I chose to handle my situation. Same with the mother with breast cancer. If someone else chooses to be more private and forgo social media, good for them.

Geoff and I have had lengthy discussions about this topic this week because it has frustrated both of us. We are in agreement and we both see how much this blog has helped me/us. It's helped me communicate, process, and somewhat most importantly, share. We know this blog has allowed others glimpses into our lives and we are ok with that. In many ways it has made us closer to people who have gotten to know us. 

I'm assuming that if you are reading this, you are somewhat of a similar opinion on all of this to us. If you disagree, then simply don't read. Please don't tell me that you think what I'm doing is wrong. For me it is right. For Geoff it is right...and for our kids, who someday may need the rumblings of this blog as a means to get to know their mother better, this blog is right.

So moving on...this week cancer took someone near and dear to my heart. He was someone I met through Gilda's house. I'm not sure I played any significant role in his journey, but for me, he that person that found a way to bring both inspiration and comic relief to the whole horror of cancer. The first time I met him he had just come back from backpacking in the Appalachian mountains despite all he had been going through and I was blown away. He was hugely supportive of my own adventures with surf camp and baby catching. 

The nurse in me watched him declining. I told Geoff a few weeks ago what I saw happening and that it was going to be really hard for me, but I wasn't expecting it yet...that's how it goes though, doesn't it? No amount of time would have made it easier and I'm glad he is no longer "feeling like a shark is gnawing away at his side (how he described his cancer pain)." Of course I wish I could give him one last hand squeeze (a Gilda's thing) or a hug, but what I've really been craving is to violently punch cancer in the face...right between the eyes...if only it were that easy.

Ok, I have to be honest, I want to punch cancer a few times...once for my friend, once for me, and once for another friend who has a family member once again dealing with cancer shit.

Family members...that was the next thing that has almost sent me blogging this week. I have a myriad of friends who have family members going through health care crisis this week and it's hard being on the other side...being the person waiting for updates and praying that everyone is going to be alright. I've wanted to fix it all for them and I feel so powerless. It's hard to be on the other side too, and that didn't escape me this week.

Speaking of crisis...Geoff, and I came home Wednesday evening from taking Ella to the ortho MD for her finger recheck (all clear though she is going to eventually loose her nail...poor baby!) and picking up E to find one of our cats sprawled out on the tile floor in out kitchen. Xochi (pronounced so-chi) is our most skittish, and vocal cat. I came in the house, saw him and instantly knew something was wrong. He lifted his head, looked at me and then just stayed where he was...right in front of a heat vent. I picked him up and he was limp. Geoff pet him and he tensed a little, but he didn't make any attempt to flee. Geoff immediately ran downstairs to get a kennel while I called the vet clinic to let them know I was on my way.

As it turned out Chi-chi (his nickname) was "blocked." This means he couldn't empty his bladder. His kidney values were toxic and he was basically in shock. When I got him out of his kennel at the vet clinic he looked like he was going to have a seizure. Our wonderful vet did a quick, but thorough exam and then stayed late to drain his bladder, give him fluids, do blood work, etc. It took 10 times of irrigating his bladder to get his urine to go from concentrated tomato soup (without the added water) to pink-tinged.

He is doing much better, though he is still not acting like normal. I stopped to visit him yesterday and he actually purred for me (unheard of with this cat). Hopefully he will come home tomorrow. He is part of our Siamese clan and they have been wandering around looking for him...Even though we have a zoo, the balance of our household is off whenever any of the members aren't here.

Other than all that, I'm finally starting to feel much better. I had one sick day this week where I needed to sleep most of the day, but other than that, I've been back at clinicals. I still have an annoying upper respiratory infection, but even that seems better. We'll see how I feel this weekend after chemo.

My current chemo regimen goes in 4 week rounds. I get chemo every week, but after 4 of those weeks I have completed another round. Today was the beginning of round 5 out of 6, so I'm getting close to the end. I'm also close to my next scan because we had previously decided to scan after this round again, so that will be mid-February. I'm so hopeful for a clean scan. I can't tell you what I wouldn't do for a clean scan.

This chemo regimen has been really tough. 

It has left me crying more times than I wish to recount. There is nothing I would love more than to move beyond this and look back on it all and reminisce about how strong I really am.

Week in Review

I still want to write a blog post about our Christmas and New Years and include pictures, but I'm currently trying to get a very overtired 2 year old girl to go to sleep and if I leave her room to get the camera she will climb out of her crib and sneak off, so I'll save that for another night...maybe tomorrow...

I can sneak a couple photos from our Christmas photo session with our beloved Beth Skogen. We just got our Holiday cards this week (completely our fault) and haven't even sent them out yet, but the photos were sort made public by a wonderful fundraising event that a friend is throwing for us in a few weeks.

Holiday photos, cards, and a fundraiser have really been the most exciting news of our week...well, with the exception of today. Today was the first day in weeks that I have felt good. I actually got out of bed, showered, and was ready to go without feeling miserable. The kids were a little wild-too much cabin fever, and we had already rented Despicable Me 2 last night to watch today. With that in mind, I suggested we take them to the Children's Museum and let them run/climb/create for a few hours. Geoff asked if I was sure I was up to it. I assured him I was and off we went.

We made a quick Target run on the way, then spent a few hours at the Children's Museum. We had lunch while we were there and then headed home. Ella fell asleep in the car on the way home, but remarkably stayed asleep as Geoff carried her in. E took a nice nap too once we got home. Geoff and I got a few things done while they were napping and then watched some Netflix. Once everyone was up we made a dinner from Pinterest and watched our movie. It may sound like a relatively boring day, but to us it was a day to celebrate. I have felt miserable for weeks and have barely been out of bed.

Sure, I've run a few errands, but I have been getting exhausted so easily it's ridiculous. I can't tell you how many times in these past few weeks we have talked about how worried we both are. Up until Wednesday, maybe Thursday, I was still having low grade fevers. I have swollen lymph nodes in my neck...one that is so big you could actually see it for a few days.

I've talked with my NP about all the possible causes...we talked about sinus infections since I've had a few these past few months. We've talked about a respiratory infection. Worst of all, we've talked about cancer spreading crazy fast. Regardless, I really think I just had some miserable viral bug combined with chemo side effects.

I had chemo yesterday, so it was really unexpected to me that today was the best day I've had in weeks, but I'll take it. I feel like my old self and I'm looking forward to getting some stuff done tomorrow...a little school work and a little house work.

In other news, I gave notice at my job this week. We decided that with as miserable as I have been feeling and the support of social security this would be best for me. It takes a lot of pressure off of me and frankly, it will help with school too since I'm currently on-call 24/7 and now I won't have to fret about what to do if I get a call while I'm at work. Once again, I feel like a bit of a bum for relying on social security disability, but the stress reduction from knowing I don't have to worry about trying to go to work when I feel miserable made it all worthwhile.

In brighter news, let's talk about this fundraising benefit that a friend of ours is throwing for us. She had talked to us about it a couple of times, but I was never sure how serious she was. Then suddenly she asked for photos for a flyer and next thing I knew she posted the flyer to my Facebook page. I am excited. Really excited actually. It's kind of a surprise party that I know about, but I don't. I've seen the flyer and I've seen a few other things that she has mentioned to Geoff or other people about the event, but really I have no idea how it is all going to go. I'm worried that no one will show up, but I've had a few people that have assured me they are coming (including my mom). Really though, how exciting!

Geoff and I occasionally find ourselves talking about dismal things like funerals or memorial services and while we've never actually made a significant decision, I see this as the solution. Funerals and memorials are for the survivors. If I were to die, they are for the people left behind. It isn't for me. This party is actually for me. Now, please don't think I'm thinking I'm going to die. I'm not. At least I really hope I'm not, but this is my chance to see everyone that matters and have fun and give/get hugs.

Don't get me wrong, I plan to have another HUGE party when I reach my 5 year survival rate, but that one I'll do the work for and this one, I just get to enjoy.

I've heard other cancer patients talk about how fun and special their benefit parties were to them. Secretly I was always jealous...not because of the benefit part, because I feel like I've been pretty lucky where benefits have been concerned. A cancer cell sale, a ready to rumble round two sale, a yoga fundraiser, a zumba fundraiser, a dessert fundraiser, a weekend away fundraiser...I really have been blessed. And that's not even beginning to mention all the people that have sent us gift cards, checks, cash, gifts, and love without any affiliation to a fundraiser.

I'm so behind on thank you notes, that I will probably still be writing them when I have my 5 year survival party...but trust me, I'm trying...The beauty of this fundraiser to me is that it is a party. For me...I get to say thank you for coming and hug people and just enjoy the day. I feel like a princess. Other than worrying that no one will come, my only other fears are that I'll get sick or be too tired, but the reality is that regardless of any of it, a friend went to all this work for me...for me...I feel so lucky!

Cancer really is a gift sometimes. Sure I'm coming up on that year benchmark and I worry about what if they were really right? What if I don't get to see my kiddos go to grade school, middle school, high school, or college? What if I never get to take that trip to Paris with my mom that we've always dreamed about? Or all the other trips I want to take with Geoff and the kids? The list of what ifs are endless, but so is the list of how lucky I have been...I have so many people that care about me and my family. I have been so blessed with the people in my life and they never cease to amaze me.

Sick Day

Today I took a sick day from chemo.

After having a wonderful Christmas and New Years...actually, the best (more on the holidays in another blog post)...I've been battling a miserable cold. My chemo round last week was horrible. I was non functional sick all week. Monday was the first day I ventured out of the house for a purpose (a birth actually).

Last weekend I almost called the clinic for hydration because I couldn't keep anything in. I've had a couple low grade fevers, but nothing significant. I've had a cough that has made my throat feel raw. I have aches and pains that combined with the bone pain from my chemo leaves me writhing and crying. I don't want to get out of bed. I can't stay warm.

I can't get comfortable, even in bed. I need pain meds for comfort, but they leave me feeling groggy and unable to think clearly. Worse yet, I realized that the pain meds I've been taking are exceeding my safe, daily Acetaminophen (Tylenol) dose.

The worst part of it all is that I have no patience. I'm crabby with Geoff and the kids over stupid little things. I'm not the mom I want to be or expect to be. 

This morning Geoff got up and got the kids ready to go. He dropped E off at school and Ella at daycare while I called the chemo clinic. I sat by the phone waiting for them to call me back until he got home. He helped me up and into the shower. I cried most of the the time because I was so cold and miserable and that's when it really hit me. I didn't want to go to chemo. When I got out of the shower I called the chemo clinic again.

I had a half hour before I was supposed to be at the hospital for labs, but I didn't want anyone to poke me, access my port,  or frankly touch me in any way. I said I would still come to the hospital for labs if needed, but I made it clear that I really didn't to go in for chemo today.

I've been offered days off before and always stubbornly declined. The last time was only two weeks ago, but I insisted that I have the chemo anyway. Today though, there was no way I was going...I just couldn't do it.

I got the day off and crawled back in bed. Geoff took care of me, but right now he had to run to UW to pick up my new pain meds. The prescription couldn't be called in to a different pharmacy because of the strength of the meds. I've never done well with pain meds this strong before, but I'm going to give to give it another try. I probably won't be to think straight, but hopefully I'll get some quality sleep and start to feel better soon.

This may sounds bad and I don't want people to start assuming the worst. Colds are just very hard for me right now and they seem to be everywhere. I have been sick on and off for months and I want to be done once and for all.