The hardest job

I wear a lot of hats...Wife, daughter, sister, aunt, nurse, midwife student, cancer patient, and so many more, but the hardest of them all is, mom. Of course it is also the most rewarding.

The last few weeks have been difficult in our house to say the least. E started 4 year old kindergarten and because of my work, school, and treatment schedule he goes to "after care" every day of the week. Ella is going to daycare full time too. This isn't exactly what I wanted, but with being on call when I'm not at work or treatment this was the best option so I could work, finish school, and maybe get some rest.

So far it hasn't worked for me getting rest and it hasn't been a joy for our expenses, but that's mostly because I'm not working the hours that I'm "supposed" to because of appointments, my week in CA surfing, and my chemo treatment schedule. At the same time it's a tough call on whether to pick up more hours because I need to finish school and more importantly I need some rest time.

If only being a cancer patient was easier and not such a burden in ways that I don't have time and energy to try to describe tonight.

Another advantage of having rest days is that I always hope that I can pick up E and bring him home so he can get a nap at home in his own bed or next to me while I rest. I would pick up Ella too, but nap time at home isn't her thing so it's near impossible for me to actually get rest when she is home...I keep hoping that will change, but so far she's been consistent.

What hasn't been consistent are our schedules and our kid's lives. One week my mom is here for a few days, then the next week I'm gone and Geoff's mom is here for a week, then I come back and I'm home for a few days before I get my port, or what the kids see as a big "owie." It's hard when looking at lives from our kids perspectives because they aren't old enough to understand it all, and one day it seems like none of it phases them and the next, one or both are having epic meltdowns and saying things that make you wonder how much do they really understand?

So far this week Ella has had a meltdown because she didn't want to leave my side for bed after seeing my port dressing. E has had a meltdown about not wanting to go to school because "no one likes him there."  This does not appear to be at all true if you ask any of his teachers or watch his class for a few minutes, but his reality is what matters most to me. Then tonight Ella sobbed and sobbed at bedtime while Geoff tried his best to console her. Finally he realized she is cutting a two year molar. While he was dealing with this tragedy I was consoling E because he was telling me how no one wants to play with him at school.

This was probably the saddest thing I have ever heard and I've been told that it will take a miracle for to survive cancer, so I know sad. I asked questions and reassured him the best I could, but the whole time my heart was breaking and I was wondering where have I gone wrong? He always seems so happy at school and everyone swears he gets along with the other kids famously. Is this because he doesn't relate to the other kids or because they don't relate to him? Is this because he is struggling with all the dynamics of our life? Or is this just a normal reaction to 4k?

I tried to talk about some of this at his school the other day and that discussion didn't go the way I had planned either. Somewhere in the discussion it turned to how good public school will be for E because he will have the support he really needs when (not if) I die. After that I know what else was said but it kind of went in one ear and out the other because that statement was a painful sucker punch that while possibly true, left me disinterested in the rest of the conversation.

Fortunately for us the next few weekends we have friends coming to visit with kiddos that are similar in age to E. I've already talked to him about it and he is so excited to play with these other kids. Furthermore, as best as I can tell from digging further it sounds like even he recognizes that kids play with him at school but he's sad because the kids from his school don't come to our house to play. 

The kids in our neighborhood all go between each others houses, but they are all a few years older than E and this past year is the year where that difference finally started to show. He isn't old enough to do the things they can and so he is kind of a last resort for them to play with. We understand this, but he doesn't always. Meanwhile Ella is still blissfully oblivious to all of this. She quite happy to have E and us to entertain her.

The one thing I've noticed that both kids are consistently happy about is Gilda's house. Thankfully they have fun there and seem to feel a connection to the other kids that are in a similar situation to them.

I just wish there was more I could do. Having cancer has it's bright points such as surf camp and so much love from friends and family but it is gut-wrenching as a mom. There are so many ways it sucks. I can't physically, emotionally, or financially live up to the expectations I had for being a mom. I don't know if I'll get to watch my kids grow up and then I have to watch them struggle with trying to understand why everything is so different for them. If only I could protect them from all of this. I would do anything. Anything.

The hard parts of surf camp...

Today was our last day of surfing and surf camp has been amazing. I have loved every minute of it, but I can't lie, I've shed a few tears while I've been here. I've tried to hide it and find some privacy, but with this many people around its impossible to not get busted.

It's hard bc each of us have our own difficulties and pain that lies beneath the surface. We have been busy and everything is so positive that I actually feel guilty for feeling sad at times. At the same time, it's hard for me to not wish my family was here with me. I wish I could share the ocean and so many of these experiences with them.

Geoff has always wanted to try surfing and I have no doubt that he would love it. Actually my Dad too...and E...The other day when I was leaving E told me to "enjoy your beach mommy." then he told me he was going to fly to CA and go surfing too. This afternoon I saw a little boy from the back that looked like E in a year or two. He was wearing a wet suit and getting ready to go catch some waves and all I could think was how much I want to be there when the kiddos try surfing for the first time or even when Ella gets to experience waves and the  ocean for the first time. This snowballed into more thoughts about how wonderful it would be to bring her here or better yet take her to see all Geoff's family in Australia, but then I feel guilty because I've been so lucky to get to go on so many amazing trips.

Last night we had a bonfire on the beach and I watched little surfer kids and their dogs playing in the waves and on the beach and thats when I first really lost it. It made me really aware of how fragile a line I'm walking and how badly I want to get better for myself and my family.

There are so many experiences from this trip alone that I want to share with my family. There is the beach, surfing lessons, Santa Barbara, outrigger canoes, the wildlife, and so many more. 

There is a part of me that feels incredibly guilty for having this week where I'm living it up and the only responsibility I've had this week is myself...meanwhile Geoff is at home with the kids, and the zoo, and the bills, etc. His car has been making a noise and he planned to have it fixed while I was gone and he could use my car. Unfortunately this has been one of those situations where each repair has led to another more expensive problem. Fortunately for us, his parents have taken care of the car repairs as a birthday and Christmas present, but that hasn't eliminated the excess stress it has put on Geoff.

I have had a much needed week off and I don't regret it, but I'm not oblivious to the fact that life has continued without me. In fact, that's another reason I've cried. At times I've wondered if this week was a practice run for the future. Of course I hope not, but the thought hasn't escaped me of even Geoff. I know he and the kids would manage without me, but I want to only be for a few days, not permanent.

I've had a great week but I know that next Monday I'm having a port placed and next Friday I'm starting chemo. I'm the only one here that is in the middle of treatments and its hard to not be jealous at times. It's hard to forget about the end of life issues that I'm facing. At the same time I've talked about it, but no one here needs to bear the burden of my problems. Each and every one of the, has their own. Each and every one of them has their own healing to do.

It's a hard place to be in. I have thoughts and fear to work through and I don't want to burden anyone here, but I also don't want to take that baggage home with me. Geoff has had enough to deal with and I want to go home happy and refreshed. My family deserves that.

This is why I've taken time to think about some of this while I've been here. I've thought about it, acknowledged it, and now I'm ready to let it go. I have so much more to be thankful for and happy about, including finding (after my shower tonight) a jade rip tide necklace Geoff had bought me as good luck for my birthday...it was in my shower kit and its been missing since I went to Nashville in May...I see this as a good omen of things to come.

The healing aspects of surf camp

Instead of an itinerary of my days events I want to change the focus to how wonderful this experience has been for me.

There is nothing more healing to me than time outdoors, wildlife, and sleep, and there is an abundance of all of the above here. In fact, the highlight of my day was just as I was feeling bad for being tired and taking a break to float on a board before trying to catch another wave, a seal popped up about 10-15 feet from me and some of the other surf campers. It was amazing and makes me smile every time I think about it.

Another highlight of my day is the encouragement and fellowship. Just before we saw the seal I voiced my frustration at being tired so easily and another camper responded with something about how strong I am and that he wouldn't have been able to go surfing during his treatment.

I haven't done any school work while I've been here. I have barely responded to emails and other than Geoff and the kids I haven't talked on the phone. For once I've allowed myself to shut down. I'm not trying to multitask and take care of everyone...there are people here for that. 

Don't get me wrong I'll be happy to go home in Friday. I miss the Geoff, the kids, and the zoo like crazy. I can't wait to hug and cuddle all of them. Though I have to say its been kind of nice to be able to go the bathroom or shower without kids, cats, and/or dogs making their presence known.

At the same time I'm going to enjoy the rest of my time of being pampered. I can't really complain about spending the day playing in the ocean and catching waves (btw I caught a couple of really great and long rides today...A-M-A-Z-I-N-G!) and then relaxing in the pool and hot tub and having delicious, healthy snacks brought to us poolside. It is a little like a spa, though I could go for a massage right about now.

Mentally I'm more relaxed than I have been in longer than I can remember. The biggest effort I've expended mentally this week is trying to figure out how to channel this chill attitude all the time and whether anything would ever get done. I've succeeded with very little effort on my behalf at prioritizing myself.

I go for hours at a time where I forget that I have cancer. When I do think about cancer, I think about how alive I feel and not that I have stage 4b cancer and I'm supposed to be dying. I'm surrounded by other people who are young and understand what it's like to live with cancer, chemo, radiation, surgery, etc. Many of them are also parents and understand the dynamics of having small kids while going through cancer treatment. We are all wounded individuals who have chosen to move beyond the difficult hands life has dealt us. That is healing in and of itself. Everywhere I look there is someone that inspires and amazes me.

Finally, even though I get annoyed with myself because I want to have more energy. I know to focus on how proud of myself I am. Really I'm a bit of a closet homebody and can be amazingly shy, but here I am in a house with a bunch of strangers and I'm putting myself out there. I'm determined to get every moment of surfing time I can get and do the best I can. I may not be ready to hang ten by the end of this week but I'll keep trying. Before this week I wasn't even sure I would be able to get up on the board and It makes me burst with pride to know that all of us have. Cancer sucks but it sure has made my life richer and more interesting in a variety of ways. That's healing in itself.

Surf Camp Day 2

So today we got up, had breakfast and hung out. A lot of the east coasters were up around 4 or 5 am, but then there were those of us that stayed in bed until breakfast. Cold breakfast was at 7 while warm breakfast was being made. (For the record you could eat both if you desired)

Before leaving each of made up baggies with sandwiches, fruit, nuts, cliff bars, etc. for lunch. We labeled our bags and threw them in an ice chest. Then we left for the beach at about 9am.

When we got to the beach we unloaded and set up. We played a game of dodgeball against our surf instructors (sort of) and watched dolphins and seals frolicking in the surf. Then we had lessons on WWTS (wind, waves, tide, and surf) before wet suit dispersal. After we got wet suits, we also got white shirts to wear over our wet suits to designate that we were beginners.

Critter, our main instructor, asked for three volunteers to go first and of course, I volunteered. It took me three tries, but I got up. It was pretty amazing! After everyone got a turn, we went again and again...somewhere in there we had lunch and after lunch all of swam maybe a quarter of mile out together to a buoy. Once we reached the buoy we each took turns diving to the bottom of the ocean (approximately 12 feet) and bringing back up a handful of sand. All these things were aimed at helping us conquer some of the main fears of the ocean.

After the buoy adventures we finished up our afternoons with more surfing and then headed back to the house for more pool/hot tub time. After spending hours in the ocean I spent at least another hour in the pool/hot tub. I finished the day with a shower and dinner.

It was a great day and now I'm pretty tired. I want to call Geoff one more time and check in with my loves at home and then I'm headed to bed.

Surf camp

So today I left for surf camp. 

My flight was at 8:45 am, but I didn't go to bed until 3 am. I set an alarm for 5:45 and another for 6 but neither went off. I woke up at almost 7. Fortunately I had everything pretty much ready so we were out the door by 7:30.

I flew from Madison to Denver and Denver to Santa Barbara. The flights were each about 2.5 hours. I catnapped and read to pass the time.

Once I arrived in Santa Barbara I was picked up at the airport by a few others from my group. I was the last of our car load (mini van actually) to arrive. All of us were given silly nicknames for the week. Mine is Tonic...Here I'll explain the flow behind it...Virginia to Gin to Tonic. Probably it up'd my cool factor 50%. Probably I needed that.

Anyway, we headed back to our house. If you want to take a peek at it, here's the link. http://santabarbaravacationrentals.us/

When we got back to house we spent a couple hours hanging out by the pool/hot tub getting to know each other. There are about 15 of us. There are a couple of "house moms" and "directors" plus a chef and sous-chef, a Dr. and a volunteer photographer. It's going to be a great week.

I've already met a lot of really nice people including another person from just outside Madison (Fitchburg)...

After pool time we had a wonderful dinner. After dinner I put a couple loaves of Zucchini bread that I made last night and brought with me (FYI, this is a pain with trying to get through airport security). Then we hung out for awhile again and finally had a house meeting. We talked about the uses and the plan for the week. We introduced ourselves and finished up with getting t-shirts and Teva sandals. This is not the shirt we got, but I'm pretty sure I need to order this http://firstdescents.org/fdstore/womens-gorilla-tee/

Now everyone is hanging out, chatting, and watching YouTube videos. Tomorrow morning we head out to begin surf camp. If you want to check out the group doing our surf lessons or maybe see embarrassing pics of me trying to surf check out http://firstdescents.org/ and http://surfhappens.com/ and like their Facebook pages. 

I miss Geoff and the kiddos, but I know this week will go fast and I'll be home before i know it. This is going to be a great week for me...it's low key, fun, and everything is done with our best interests in mind...example: the food is all vegetarian with a lot of fiber and micro nutrients.

No chemo

I was supposed to start chemo today, but I didn't.

Geoff and I had a busy morning...it was E's first day at 4K and Ella's 4th day at a new day care. After we dropped both of them off we headed to UW.

I had labs drawn and an IV placed. It took a few sticks and I wasn't thrilled, but the person poking me did a good job. Then we headed downstairs to my chemo clinic appointment. We only waited in the waiting room a few minutes, but there was a bit of wait once we were in a room. Of course it was completely worth it bc we got our wonderful NP.

We did the usual and went over how I was feeling and did a mini exam (listen the heart and lungs, feel my lymph nodes and abdomen). Then we talked about my labs. My blood counts were a little low but not bad so we discussed another couple blood transfusions to give me a boost before starting chemo. We talked about me getting a port placed at the end of the month and a few other things. Mostly nutritional questions I had or specific labs I wanted checked from doing more research.

Then she went to meet up with the oncologist and they were going to come back together. I knew ahead of time that my NP was actually not scheduled to be in chemo clinic today, she was making an exception for me and adding me into her already busy schedule. I wasn't surprised when the Nursing Assistant popped her head in the room to let us know there was going to be twenty minute or so delay. That was fine with us.

In the end the delay was probably more like an hour but it was fine. We kept ourselves occupied. In fact we were outright laughing at a video we watched on the Internet when they did come in and I thought it was someone coming in to tell us to quiet down. I had a hard time suppressing my laughter during what the oncologist acted like was a very serious discussion.

So the serious discussion was that one of the chemos I will be on is not ideal with procedures like having a port placed. So not ideal that the department that places ports has a policy that there is a four week waiting period between chemo administration and the port placement. I got the drift immediately and knew exactly what I wanted to do, but the oncologist (not one of our normal team) wanted to go over everything with us including all the options anyway.

He reassured us profusely that it was ok to wait if that is what we chose. He even went so far as to say that if I wanted to take a three month vacation to the Galápagos Islands before starting chemo it would be fine. He didn't think it would change my overall prognosis. This discussion went on for some time.

Then he had my NP go over the options. I could get the port placed this week but then I wouldn't be able to swim/submerge in water next week when I go to surf camp in CA. That seems a little ridiculous. 

I could get a different type of IV access called a PICC line. I haven't wanted a PICC because it sticks out like an IV and will be difficult to maintain with the kids. Also PICCs don't do well with being submerged and I would like to go back to swimming lessons with the kids (they have both been in swimming lessons constantly since they were 7 & 5 months old until I started having problems with my old port last year and then had surgery to boot).

I could keep getting IVs but I'm already a really difficult stick that usually requires one particular person to poke me and more chemo is only going to make that worse.

Or I can wait until I'm back from surf camp. I chose that option. Gleefully I may add. Geoff looked a little less convinced, but I was already thinking ahead. There are alternative therapies that I haven't been able to try while I was on chemo. I couldn't try them when I was done with chemo either bc the plan was that the chemo would still be working at this point, but since I've obviously built up a tolerance/resistance to it and I won't be starting again for a few weeks I wanted to discuss whether these were possibilities in the interim.

I happily asked away and got the go ahead. The oncologist we met with today is supposed to be a little more excited about some of the alternative therapies but we both got the impression he was less thrilled with some of the nutritional options I proposed. I'm not planning to do anything crazy just drink dandelion tea and cut copper from my diet amongst other things. I figure as long as it won't interfere with chemo in a few weeks then why not try?

We had a fairly long discussion about complimentary medicine and Geoff and I were both able to ask our questions. I checked in with Geoff a couple of times to make sure he was comfortable with me waiting to start and he was, so this is what we decided.

I will go to surf camp as planned Sept. 15-20th in Santa Barbara, Ca. Everyone was very supportive of this choice...everyone!!! Then on Monday the 23rd I'll get a new port which I am dreading and the following Friday I will begin chemo.

In the meantime I will learn to love dandelion tea and let my blood counts recuperate. I will also recuperate and hopefully start off this next round of chemo with a little more pep. Personally, this just felt right to me...

Ad speaking of feeling right...the oncologist today talked about how he doesn't like to talk about people fighting cancer. He prefers to compare cancer to weeds in a garden. My NP swears she didn't tell him...

By the time we were done it was mid afternoon and I was starving. I had to premedicate last night at midnight and this morning at 6 am with heavy steroid doses. These steroids are to protect me from potential reactions with one of the meds and they also help combat nausea...actually, they make me down right hungry. I sat through the whole appointment with the munchies. I ate tic tacs that I had in my bag and thankfully Geoff brought natural raspberry figgy bars to surprise me. These held me over until we could go get a delayed lunch which I devoured.

By the time we got home it was too late to salvage our work days so we thought about going kayaking for a little bit until we needed to pick up the kids. However, we couldn't find all the parts to our car rack for the kayaks so instead we tore apart the garage. This has now led to a long term project that is going to result in a garage sale Sept 20th & 21st (my mom will be helping while I am traveling home). We are going to use it as a way to declutter and cancer fundraise. Feel free to participate as a shopper, seller, or donater.

Cancerless Garden

I think I've finally made a decision about chemo. I haven't actually called and let my oncology team know yet (ill do that in the morning), but everything is already scheduled and set up for Friday morning.

It was set up for last Friday too and I was sure I would have a decision by then but at that point I had no clarity. Geoff and I talked about the choices until we couldn't take anymore and then we talked some more. We researched the different medications via pubmed and Geoff even went as far as digging deeper on clear cell adenocarcinoma of the cervix research and then calling to set up second opinions with some of the latest and greatest Gyn Oncologists in the country.

So far he has talked with one at Mayo who felt I was getting great care (of course I am) and he has a few others lined up for later this week. We aren't really expecting to find anything different but it doesn't hurt to try.

I've been pretty stressed by this decision and the choices or lack there of (depending on how to look at it). I'm sorry to everyone who has called and messaged me that I haven't called back yet. I needed a break. I'm a home body at heart and everything has been overwhelming. I needed to regroup. I've been really tired and dealing with side effects from the last round of chemo while trying to psyche myself up to start another round.

I've been pursuing alternative therapies and really enjoying all that I'm learning. I have a little collection of yoga, and Pilates, DVDs and I'm thrilled. If only I had more time and energy. Someone from Gilda's Club lent me some CDs from a retreat they are going to soon. The CDs are called "Cancer as a Turning Point: From Surviving to Thriving."

I have found them to be very interesting and therapeutic. They really build on something I struggle to find words to talk about in this blog...how much cancer has taught me. I've learned so much about myself, about those around me, about healing, and so much more. I feel like I am constantly learning and evolving and I don't even know how to find the words to describe the platform that all of this has been built on.

This brings me to one of my hardest struggles right now...A week ago I was sad, very sad, but now I'm back to where I was before the scan derailed me. I am hopeful and optimistic. I am using this journey to grow and become a better person. I'm no longer angry at cancer, in a way, I'm thankful. This is hard for others to understand and therefore it makes it hard for me to be around people who are still stuck on mourning all the losses from this past year.

Don't get me wrong, I still mourn them. I'm still sad sometimes too, but not overall. I get really down when I think about my poor prognosis, but there is so much research out there about the power of the mind to heal one's self. So much of it is poorly understood. I find it fascinating in a way I never would have understood before.

This is where I sound like I have really gone off the deep end...by suggestion of someone I really trust it was recommended that I look into an alternative intuitive healer. This healer has been very helpful to this person and came highly recommended to them. I talked with this healer today via the phone and it was one of the most amazing half hours of my life. I barely told her anything about me and the things that she was able to read from me and suggest to me were so in tune with who I am. It really restored my hope and faith.

From this experience I have decided to take the leap into something I have been struggling with for weeks...how to define what I'm going through. Recently I've had multiple discussions with people about the terms "battling cancer" or "fighting cancer." I've heard other people say these words don't resonate we'll with them and frankly, the more I thought about it, the less I felt they suited me either. I really despise the idea of being described as "loosing the battle with cancer." I'm not battling cancer. I'm not fighting it either. For me, these terms remove all acknowledgment of the inner peace I have found within this journey.

Of course I wish I didn't have cancer, but I do. Of course there have been times when I've wished I could blow it up, but it doesn't do me any good. In fact, after I had the bad scans I looked at Geoff and said you know what, "I'm going to try something different." I looked down at my abdomen/pelvis and said "I have learned a lot from you and for that I will forever be grateful, but please leave now cancer." It's so obvious that it seems silly and ridiculous and I'm embarrassed to share this story, but it felt good.

So that's where I am right now. I'm choosing to heal myself in a peaceful manner. I will use conventional western methods like chemo, and I will use alternative, or eastern methods, and take what I can get out of this journey instead of fighting the ride and I will grow from all of it. I've heard cancer described as weeds in a garden and I like that analogy. It allows me to feel like I am cultivating the beautiful and helpful flowers to grow while weeding out the cancer.