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.

Birthday card

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

Part of the problem I have always had is when do you stop? 18? 21? 30? I know it's a personal question, but what if whatever age I choose isn't the right one for them and they go through another version of the loss of the mother again? Personally the number that always comes to mind is 60. That way they are at a point when they would already be getting adjusting to the idea of losing a parent, and they would have quite a collection of cards that they could reread. The downfall is this is a major undertaking when my kids are only 2 & 4 years old.

One thing I feel silly for never thinking of myself is the fact that I could live and be around to reread what I write to them over the years. Someone at Gilda's pointed this out and it seems so simple and obvious. I liked it.

Back in the day before I had cancer I used to watch a show on Showtime called "the Big C." It's about a middle aged woman, wth a husband, and teenage son who is diagnosed with terminal melanoma (skin cancer.) It takes place in Minneapolis and I loved seeing and hearing about some of my old favorite stomping grounds (I really miss that place!). In the first season one of the ways she deals with her diagnosis is by buying gifts for her son's future birthdays. She even gets him a cherry red convertible for his 16th birthday. She hides all the gifts in a storage locker, but he eventually stumbles across the key and gifts. He doesn't appreciate all the work and thoughtfulness of her gift and doesn't understand why he can't have the gifts now.

I know I have little people who are less likely to stumble across gifts, but I always have questions such as how do I know what's going to be appropriate for these little people in the future? If I make a DVD for them, are they going to have to resort to some archaic form of technology in 10 years to watch it? If I find a thoughtful and meaningful necklace to tuck away for Ella, what do I get E. How do I know what to write? Of course it should be from the heart, but if you only had one chance to write congrats on graduating high school or college would you know what to write?

All of it seems very daunting to me.

Then yesterday after my scan I decided to do a little Christmas shopping. I was in a line waiting to check out when I saw a card that reminded me of Ella. There was a flowery graphic of the silhouette of a little girl running with rain boots, a headband, and butterfly wings. The words on the outside of the card said "Nature never repeats herself, and the possibilities of one human soul will never be found in another." -Elizabeth Cady Stanton The inside reads "Celebrating the one and only you. Happy birthday." I loved it. Next thing I know I'd found a card I loved for E too and then a few more. Next thing I knew I had a small stash.

Then I finally got to the checkout and I found a couple more little pop-up cards that I loved. I decided that the hunt for and challenge of finding cards for the kids, Geoff, family, and even a few friends was appealing, so I bought them. I'll stash them in a box and write in them when I feel inspired. In the meantime I'll enjoy the challenge of finding and making the coolest cards to give for the next 50 some years and hope I get to be around to reflect on all the silly sentimental notes I write.

Today was a snow day so school and daycare were cancelled. This meant the kiddos were going to chemo with us. At first I was a little panicked because not only was I getting scan results today, but I was also doing my music video, and it was a long chemo day. It was going to be a lot for all of us. Fortunately though some amazing anonymous person sent us a package yesterday filled with things "for when your mom isn't dealing well." I keep a bag packed and stashed in case we I ever get sick and we need to go in suddenly, so I updated the bag with a few things from the package and added in some holiday Classic DVDs such as Charlie Brown Christmad, Frosty, Rudolph, etc. and away we went.

In addition to the really thoughtful "sick day package" I also received a package from a school friend yesterday with "Believe" socks, a "Believe" book full of beautiful affirmations/quotes, and a few other things (including an awesome car magnet!). I immediately read the book from cover to cover yesterday, but this morning I pulled it out and reread some of the affirmations and put on the socks. It felt like the timing on those packages had to do with fate. I can't tell you how much some socks helped to ease scan-xiety and help keep things in perspective.

Finally we headed out. We were fashionably late as usual which was frustrating because we trying to match our timing up with timing of multiple nurses and MDs for the video. When I finally got to my oncology/chemo clinic appointment we decided to forgo waiting for the MD to get my results right away and we headed back upstairs to the chemo area to start working on the video.

It was fun. I can't dance, but I gave it heart anyway. There was suddenly a lot of people who mean an awful lot to me there. We danced and giggled and hugged. Ella scowled at us and E waffled about whether he wanted to make a dork of himself with us. It was great!

Finally it was time for results so Geoff, the kids, one of my oncologists, and my lovely NP all shuffled into a little room to talk. The kids tried to be good, but we didn't really explain what was going on well to them and I was tired and not as patient as I would like to be so they chose that moment to start to fight and act out. Geoff tried to keep them occupied so I could at least discuss the results, but as usual our wonderful NP saved the day by taking the kiddos for a "walk." On this walk they found our favorite social worker who then ended up with the kids so our NP could rejoin the pow-wow.

So the results were mixed. Essentially this means that all the tumors we have seen before have greatly decreased in size/metabolic activity. Great right? I think so! The downfall is that there are a few new tumors we haven't seen before in my pelvis and one (?) in my right neck.

What does all this mean?

1. Best case scenario...my last scan was in August. This is more than three months ago (normal period for scans), and I delayed treatment for surf camp. During this time things may have been growing. New things, such as these new tumors. This would explain why we haven't seen them before. The down side of this theory is why haven't they responded as well as the other tumors.

2. The dark horse theory...it's highly unlikely, like less than 1%, but still possible...the chemo worked for some of the growths! but not the others, such as these new ones. Apparently it doesn't happen often, but it does happen.

3. Worst case scenario...I've hit my peak with this treatment and the cancer has become resistant. If we would have scanned a few weeks ago we would have seen even better results and now stuff is growing again. There were down sides to this theory too, but is can't remember them exactly.

Overall, the best indicators are my gut feeling and how I have felt. I can really waffle about things at times, like if you remember when I was trying to decide treatment regimens I had a really hard time deciding, but I immediately felt option number one is the right one here. I felt really crummy and "cancer symptomatic" around and after surf camp. I wanted to start chemo so the pain, crazy night sweats, and uncontrolled weight loss (I love losing weight any other way) would stop.

I asked if the nodule in my right neck is near my port because I can't feel an enlarged lymph node there, I never could, but I had cancer pain there since before my port was placed. I still have a little there but it is much less, so that made sense to me. Same with my pelvis. For me, number one makes the most sense. I'm considering #s 2 and 3 too, but I'm stuck on 1.

We talked about options. Everyone was in agreement that I should stay on one of the chemo meds, Avastin for the rest of the treatment plan. The other chemo med on the other hand, the oncologist wanted to discuss me dropping due to side effects. The neuropathy (numbness and tingling) in my feet is bad. According to my oncologist/NP it can be permanent and even lead to a wheelchair. I understand the risks, but personally living is more important to walking. I promised to let everyone know if it gets worse again, and Geoff threatened to tell on me if I don't.

The rest of the plan is that I will follow up with another scan in two months instead of three to reevaluate. This seems like a good idea to me. Actually it is exactly what I wanted.

I never thought the results would be an all clear, so I'm happy with the results of today's scan. It gives me hope and worst case scenario it gives me more time. In the meantime Geoff and I want to continue to clean up our diets, work in some time to exercise, take better care of ourselves, and most importantly get good sleep. Geoff needs to spend his time job hunting and sleeping so he can function better for all of us because he has too much on his shoulders already. I'll spend my time finishing up school and trying to figure out what to write on all these cards that I'll be hunting for and making. Hopefully I'll be around for decades to reread and reflect on all the silly things I wrote in them.

Big Day

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

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

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

Scan-xiety

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

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

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

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

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

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

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

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

Personally, I'm hoping for a Christmas miracle.

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

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

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

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

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

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

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

Worst mom ever

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

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

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

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

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

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

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

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

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

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

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

So, I completely lost it.

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

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

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

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

I should have known better.

This is what followed...

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

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

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

Jumbalaya

I think this is the longest I have ever gone between blog posts. Trust me, it is not intentional...I've just been really busy and shall I say, conflicted...

The way it usually works is I have a lot and my mind and it's compartmentalized and easy to break into separate blog posts. That hasn't been the case for me these past few weeks.

Here are some of the topics that have been running through my head...chemo symptoms, fundraisers, school, finances, cars, Ray, Geoff, kids, pets, my ankle, breaks, chemo rides, the medical assistant from today, Holiday pictures, oh and my music video.

chemo symptoms-I've talked about these before...nose bleeds, neuropathy in my feet, digestive issues, fatigue...I'm noticing more and more that I just don't have any stamina anymore. It frustrates me and of course, it frustrates me when people either don't notice at all or comment all the time on it. This is not really fair of me, I know. I can't help it. I desire a certain level of acknowledgement, but too little or too much and I'm done with the conversation. Probably this is because I know that I am doing everything I can and I want acknowledgement for that and I don't need anyone else to draw attention to my weak points (this is something that I am also very good at doing myself).

fundraisers-I should probably talk finances first, but this came to me first so this is being discussed first. Currently, I have multiple fundraisers. I have the rumble-round-2 fundraiser (started by a Madison friend-also the creator of the cancer cell sale, our first ever fundraiser which saved our butts and made us laugh), today I have the zumba fundraiser (started by a friend that Geoff went to undergrad with-also did a Harvest fundraiser with her family where she baked and delivered baked goods to anyone in the Twin Cities...it was pretty awesome), ginny-and-geoff-s-mini-madison-vacation fundraiser (started by a fellow home birther that I've never been fortunate enough to meet in person-she lives outside the US and is still organizing all of this), the Circling Up Mandala fundraiser (started by an artist I have never been fortunate enough to meet after my amazing classmates commissioned an original piece of art for me), and for a few more hours the yoga fundraiser.

I don't even know what to say about all of this. Honestly, it's the probably the biggest reason I haven't blogged because I wish I had the grace to express how grateful and appreciative I am, without sounding like I am boastful. There is a part of me that worries that we don't deserve it all or if I talk about it, all of it will all go away, or people won't donate. We have relied so much on these fundraisers that the idea of them all going away scares me, so I convince myself to be quiet about it when all I really want to do is scream THANK YOU!!!! Thank you to all that have created these and Thank you to all that have participated/given/shared with friends/etc.!!! I wish I could do more to tell all of you how much of a difference it has made in our lives. THANK YOU!!!!

school-I'm finished with all my didactic (non-clinical) coursework. It is time to register for the next term and I have nothing left to register for. I have less than 300 hours of my required 675 hours to go. I have been plugging away on my big clinical assignments. Out of the four, I finished one this week. I have another that I did a significant portion on this week and I have to monitor a forum post for the next few weeks to successfully complete. I have a long journal/case study to write, and in December I have a gynecology assignment to do. Other than that I have some short clinical papers that I'm working on. I have 12 more births to go. I need some new OB appointments, some 2-8 week postpartums, and a some gynecology appointments and I'll be ready to take the big tests. The first test I will take is practice comps, which sets me up to take comps, the test that I take to qualify for my master's degree. After I complete practice comps, and comps, I take the national board exam to certify that I actually have the knowledge to be a nurse midwife. I'm getting close to the end, but right now I'm just taking it one step at a time. I can't think about the tests yet...in a few more weeks. My goal is to have all of my assignments/paperwork done by the end of this term so I can just focus on clinicals and practice comps. I'll keep you up to date on how all that goes...

finances-Things are so much better. Thanks to the fundraisers (see above) we can pay our main bills and we have a bit of a cushion. I completed my paperwork for Social Security Disability (SSD) this week and I've already received a phone call today telling me that because of my diagnosis my paperwork will be expedited. I still have guilt issues about SSD, but I'm working through them.

cars-This the financial part that sucks. I took care of the tabs for our cars and the break light (thank you!!! you know who you are), and immediately one of the headlights went out (thank you!!! you know who you are too-well, you bought a break light and suggested we use it for the headlight when you realized we already got the break light and you helped fix the break light)...Now I'm trying to budget in breaks for my car and make sure we get the tires replaced on Geoff's car, in addition to lessor things like a rear windshield wiper for my car, and now a headlight for his car. All of them are important, but expensive and time-consuming which is appropriate because time and money are the two commodities that seem to be the hardest to control through all of this. Fortunately, we were given information for a local charity that does repairs for wholesale for people in situations like ours, so I need to call and see if we qualify and hopefully that will help some.

Ray-I didn't go to Gilda's house this past Tuesday because I was busy with clinical work for school, so I haven't seen Ray since right after I started the fundraiser for him and his wife (Ray's fundraiser). He wrote a caring bridge entry entitled an angel about me and it made me cry. I'm so very appreciative and proud of all my friends and family that have helped him and his family. I wish I could do more, but I'm glad we got the ball rolling and hopefully all will be OK for Ray.

Geoff-Geoff is my main concern right now. He is having a hard time. It's hard to be the spouse in a situation such as ours. So much of the responsibility is on his shoulders and there really isn't anything that he gets to give up, yet the focus is usually on me. All the time that he has missed from work has taken it's toll and he's feeling really behind and frustrated. He's overtired and under-rested and on the cusp of getting sick. We both recognize all this and have been pushing to protect his time and his sleep, but there never seems to be enough hours in the day and there always seems to be more for him to do. (though I did take care of all the front yard work yesterday-thanks to my parents for lending their gas blower to us...I still had to rake too...) I really wish I had a magic wand so I could just make it all better for him...He's the best husband and dad. He loves all of us so much and would do anything for us...

The kids-The kids are doing pretty well, well mostly...Ella is thriving in her daycare. She's doing really well with potty training and she has something to say about EVERYTHING! She is really funny and sassy...Oh and she had pink eye last week. Gross! E was lucky to dodge the pink eye, but he has been battling a lingering cough. Other than that, he is doing really well and seems to love 4K, though we were recently informed that he doesn't have a best friend other than Ella, and he would really like one. I'm excited for the holiday season with the two of them again this year. E asks about Santa on a daily basis and is really excited for our house elf, Alfred to return in December.

My ankle (and pink-eye)-Sooo....this should probably be my primary concern right now, but of course it is buried down here...A few weeks ago I tripped in the garage and twisted my ankle, then Wednesday I was standing up and leaning across our bed when I heard a tearing noise come from my ankle and felt severe pain. At first it was like a "snake bite" (something we used to do as kids to each others arms where we would use our hands to painfully twist the skin in opposite directions...don't ask why we did this because it seems like the most idiotic idea to me now), then it was a shooting pain. It immediately swelled up so I look like I have elephantiasis with some bruising. Geoff and my niece teased me that they thought it was broken and I should go to the ER. I considered it, but I'm stubborn and decided to call my NP instead and hold off until I was at the hospital today for chemo. I forgot that I actually had an oncology appointment scheduled for today or I probably would have just skipped the phone call all together. Sooooo...this is where I mention that I woke up today with pink eye. Damnit!!! but I already had drops left over from Ella. Then I went to my appointment...I had films of my ankle done and sure enough I have an avulsion fracture. I'll see ortho on Monday and I'll know more then, but they have already thrown out the idea of casting it and I'm cringing at the idea. I've considered all the things I won't be able to do with a stinking cast so I'm trying to balance being good and resting and taking baths, and um, riding my horse...We'll see how it goes...maybe they meant walking cast :)

Breaks-So as mentioned above someone did a fundraiser just for a mini Madison vacation for Geoff and I. Can I tell you how excited we are? Personally, I would be OK with sleeping the whole time and I think Geoff would be too, but it sounds like there might be more involved than that and that is exciting too! Then yesterday we got a gift card from a "Secret Santa" for the Great Wolf Lodge in WI Dells, so now we get a mini vacation with our kids too!!! I pretty much feel like royalty. I think we are going to wait until the new year to go to the Great Wolf Lodge and hopefully my parents are going to come along with us so we have extra adults so we can ride the water slides together too. Right now these get-aways are what are holding me together.

Chemo rides-With Geoff needing to minimize how much time he is away from work, I might need to arrange for rides to/from chemo. I'm not excited about this because I hate burdening anyone else. I know there are charities that do this, so I may need to look into that too, but argh! I was really spoiled. We'll see how it goes. Right now he is going in earlier and I'm meeting him part way and then we are leaving his car in a safe spot while he takes mine so he can pick me up and drive me home. Then we go back and get his when the benadryl has worn off enough that I can drive...We'll see if this stupid ankle thing messes any of this up.

The medical assistant from today-Today's appointment was frustrating because the medical assistant (MA) and I got off on the wrong foot (maybe it was my bad ankle?...that was a joke). She isn't usually in the gyn oncology dept. and doesn't know me and my major aversion to "the chair." I basically refuse to sit in the gyn chair to have my vitals taken and I know that frustrates some of the staff. In my defense they use portable vital carts that allow them to take vitals anywhere and I have rights as a patient. I don't like the gyn chairs. I allow everyone to think that it's about pap smears and all that stuff, but really what it is about is it's where I was sitting when I first had someone tell me face to face that I have cancer. It's where I had to hear it for the first time and where I had to deal with for the first time in front of what were at the time strangers. There isn't a lot in my life that can compete with the pain of that situation and I still relieve it a little every time I have to sit in one of those damn chairs. I also have to admit it's a power struggle. I am prideful and in control of myself and when I sit in those chairs I feel vulnerable and weak. I know the medical assistant doesn't know that when she tells me to sit in the chair, or tells me she doesn't have time to argue with me, or the doctor is waiting and doesn't have all day for me, but I have the right as a patient and a human being to say actually I prefer to sit over there.

Today wasn't the first time this happened, but it was the first time it continued. Then there was an argument that never needed to happen over blood pressure cuff. I stopped talking and she continued saying snarky comments to me until I said something along the lines of this needs to stop. I asked if I could take my own temperature to help and she snapped no, I'll get your temperature.

I'm including this in here because it is on my mind and I need to vent. I'm not doing this to humiliate her or even to get sympathy. I'm including this because there are so many people in my life that have health care related careers or because everyone is a patient at some point. Regardless of what side you are on, provider or patient, remember that patient is a human being and has a right to his/her feelings. He/she isn't trying to make your job more difficult. I was actually trying to make it easier. I know that my blood pressure is find if I avoid the chair, but it goes up in the chair. As a nurse, I would never ask someone to sit somewhere that is going to make them uncomfortable in anyway and I have the same expectation of those caring for me. I think it's a pretty simple request. By protecting my needs I am ensuring she won't have to take my blood pressure again. Then we argued about the cuff because they always use a large cuff on me. I have lunch lady arms and the regular cuffs have a tendency to pop off of me. I've never had anyone argue with me before but again, why would she want to have to take my blood pressure more times? She already stated she was under a time crunch.

When she left the room, I cried. I felt like my space had been violated. I already don't appreciate that at 36 years old I am terminal gyn cancer patient. I love my providers and I feel like those appointment rooms are a sacred space to me where all my fears and weaknesses are addressed. I have laughed and cried in those rooms more than anywhere else I can think of and I more than anyone want to keep things as simple as possible. I left feeling hurt and mad. I addressed the issue with my NP, but I felt like a little kid tattle-telling and that made me uncomfortable too. I thought about writing to patient relations, but ultimately I don't want the MA to get in trouble, I just want her to have some extra compassion.

Holiday pictures-I just have to include this because it is on my mind. We have been fortunate enough to have been gifted credit with a few photographers including our beloved, Beth Skogen. I need to write to Beth and set up a time for photos, but this is ridiculous, I'm waiting on shoes for Ella that are back-ordered in addition to hair cuts. I just want to get it done and yet I'm not sure we can ever top our photos from last year. Beth did such an amazing job...I guess we'll just have to give it a try...

Music video-I decided to make my own cancer music video. I feel like I'm essentially copying Stronger cancer video, but I love this video, and I decided I wanted to make my own. I want to do something else to make chemo fun. I'm not sure I want to discuss all the details yet, but I'm going to through out there that if anyone is an experienced videographer that may be willing to volunteer some time and/or anyone has experience editing I would love some extra help. We are looking to do this around noon on December 20th. I have chemo that day and currently Geoff is slated to do all the technical stuff, but it would be nice if he could be in the video with us. I'm also trying to figure out if we can sneak E and Ella into the video dressed up as tigers (that's your hint to my not super secret song)....Anyway, any and all help or suggestions is appreciated because I'd really like to do all I can to make it both fun and amazing...I'm hoping to have it done (this is probably too ambitious) by Christmas Day or New Years at the latest so be on the watch

Above all I have faith that it will all be OK. I continue to pray each day and I know that I/we are in the prayers of so many others and I continue to believe in the power of prayer and miracles. It will all be OK.

Help 2.0

Writing for help for myself and my family was one of the hardest things I have ever had to do, and yet one of the most rewarding. Friends, loved ones, strangers have been amazing to us beyond our wildest dreams. I was able to pay the mortgage for November on time and at the beginning of the month and I have to admit, I felt spoiled. 

I swore I would never ask for help again and I meant it...for me anyway. This time I am paying it forward and I am asking for help for someone else. A friend, a fellow cancer warrior, Ray and his wife, Bonnie.

I met Ray this fall at Gilda's Club. His face was ghostly white and he was extremely weak. The nurse in me did not like what I saw. 

I had a lot to learn about other cancers and stem cell transplants. Ray had a stem cell transplant on July 3rd (see his story below). He was extremely frustrated by how tired he was and everyone that had experienced stem cell transplants kept telling him "100 days," "it takes until at least 100 days" "100 days is the turning point."

I was curious. 

Outside of Gilda's, I had never known anyone who had undergone a stem cell transplant before, and I knew nothing about this "100 days." I watched and waited. Week by week Ray crept towards his "100 days" which he reached mid October. The transformation was amazing! The weak, pale Ray has been replaced by someone with color. He no longer looks like he needs someone walking next to him in case he gets wobbly. He looks stronger. To me it was an amazing transformation, but of course to him it is still a battle.

He isn't as strong as he was before, and he definitely doesn't have the endurance as before. He's at the turning point in his recovery where he is feeling well enough to get through the day without sleeping 18+ hours, but instead of being able to revel in that victory he needs to start planning his return to work.

Ray has been away from work and without income for much longer than he would have ever anticipated. The financial drain has been devastating. At a time when he should be getting ready for his glory years and building a nice little cushion, cancer has taken all of that and then some away.

We have commiserated about the pain and embarrassment of the devastating financial blows of cancer. I have stressed and stayed up at night trying to think of how to help Ray. So many people have helped us and set up fundraisers for us. People have sent us cards, gift cards, checks, and even cash. It has not only saved us from not being able to pay our bills (particularly our mortgage), it has reduced our stress 1000 fold. I want to do the same for Ray. 

Ray and Bonnie have had no fundraisers. They have had enough financial support from family to get through the month of November and then they don't know what they are going to do. This is a constant stresser for them and it should not have to be. No one should be going through what they are going through, esp. before the holidays. 

Help me give them the holidays they deserve (Ray was in the hospital through Thanksgiving last year and really deserves it). Give enough money to help buy a turkey, a tree, a gift, or to pay a bill. Give $5 if that is all you can do. As someone who as been in Ray's position I can honestly say that any amount, ANY is appreciated, and it does make a difference.

Just please help Share the care

Rays story (abbreviated) as told by Ray...

Between 1986 and 1994 I had three isolated plasmacytoma tumors, which is apparently very rare. Usually the disease metastasizes, at which time it is called Multiple Myeloma.  Plasmacytoma tumors are very responsive to radiation, so with each one I had a course of radiotherapy, which shrunk the tumors, and life went on.  After a number of years I thought that my cancer was all in the past.

But what I learned later is that radiation therapy can cause other cancers, which I should have known, but never really thought about.  Fast forward to 2012.  At that time I was seeing my primary care doctor regularly to follow high blood pressure and diabetes, with frequent blood tests.  There was something in my results he didn’t like or understand, as my blood counts seemed to be consistently a little low and getting lower each time.  So he sent me to a hematologist at UW for a closer look.  

It was April 2012 when I first met with Dr Longo, my hematologist. He immediately recommended a bone marrow biopsy (I had already had a few of those with the plasmacytoma tumors), which showed some abnormalities.  The diagnosis was MyeloDysplastic Syndromes (MDS), which is a whole group of disorders in the marrow, and which usually evolves into something more serious, usually leukemia.  There was nothing to be done immediately, but he wanted me to come back every six months for a repeat bone marrow biopsy, as he assured me that this would surely change at some point in the future.

So I was back in October 2012, and this time the diagnosis was Acute Myeloid Leukemia (AML). He wanted to admit me to the hospital immediately to begin chemotherapy. That was on Thursday, October 25th, but we talked him into taking the weekend to get some things in order before admission. So I was admitted on Monday, October 29^th, and expected to start chemo immediately. But there was a stage 3 clinical trial going on where I could get a different chemo drug, called Clofarabine.  (Actually not a new drug, but a new application for it.)  We decided to give it a go, and in the randomization I was selected for the new drug, a very lucky selection in my opinion.

So I started chemo on Tuesday, October 30^th.  The drug is administered for one hour each day for 5 days.  (By comparison the standard treatment is administered over 14 days, 24 hours each day.)  It all went very well, with essentially no side effects other than headaches.  Then I got a fever, which kept me in the hospital an extra 10 days, until the 14^th of November.  I had to return the following Tuesday, two days before Thanksgiving, for the second round of chemo.  These 2 rounds are called “induction”, and are designed to put the cancer into remission, which they did.  I returned home the following Saturday, the 24^th, to recuperate.

Two more rounds of chemo, in early February and early May, these are called “consolidation” treatments.  They reinforce the remission, and prepare the marrow for the transplant.  During these rounds I was still working.  I would go to the hospital in the morning for the chemo, then off to work for the rest of the day.

All this time they were looking for a donor for a stem cell transplant.  Neither of my siblings were a match, so they turned to the international registry of willing donors.  They match on 8 markers, and always try to find a full match.  But the best match they could find was a 7 of 8 donor from Germany.  The transplant was set for late April, but then this donor developed a medical problem, which was all the detail we could get.  That was apparently resolved, but he was unavailable in June, so the transplant was eventually rescheduled for July 3^rd.

So I was admitted on June 27 to start the “conditioning” chemo for 4 days, then 2 days of rest before receiving the transplant on Wednesday, July 3^rd.  There were very few side effects from the chemo again, I really got off pretty easy

It was July 23^rd before I was released from the hospital.  By that time I had started to grow new blood cells from the donor stem cells, and everything was looking very good.  I was tired – that doesn’t really describe the fatigue that comes from this procedure.  But all in all I felt pretty good.

In the months since then I’ve just been moving along the road to recovery.  There have been numerous symptoms, from the fatigue and nausea to a little bit of rash, to depression, especially as I ponder my return to the work force and a “normal” life.  There’s also been the worry over our financial situation.  I had expected to be back at work by now, but I just don’t have the energy to seriously consider that.  I have missed nearly six full months of work so far – November and December of 2012, plus July through October of this year.  Since I work as a consultant, and have no disability insurance, that’s also six full months without any income, and we were not prepared for that.

You can read more of Ray's words at his caring bridge site: rayjacksonmadison

Also, I plan to take photos of Ray and Bonnie and hopefully even talk them into a video this Tuesday at Gilda's. I'll post those as soon as I get them.

Finally, please help. They are wonderful people and you have no idea how much a little bit of your money adds up to be a lot of help for them. If all my Facebook friends or the people reading this blog gave $10.00 then they would have a few thousand to help them through this difficult time. I am literally begging you, another thing I will never do again. I thank you in advance.