Blood work purgetory and on deck for surgery

I made a rule for myself that I couldn’t blog until I uploaded vacation pictures, so this has been a long time coming. But if you scroll down, I have updated both vacation blogs with what is most likely more images than you want to see, so enjoy.

A lot has been going on since I’ve gotten home. There are a lot of changes going on in my life, which I think are good things. Some of them I’m going to give some privacy for now, but others are certainly worth an entry. I’ve been getting back to working out like I did before cancer which is great. I’ve fallen so far that it’s a tough road, I feel like I should be able to do so many things that my body is just not willing to follow me on, but I’m getting there. The chemo drugs as well as the steroids not only put weight on me, but they actually eat away muscle tissue so it’s a long road, but an attainable one. I got a reminder on Monday of just how much my body has been impacted. I went to the police station to be fingerprinted (I am subbing at Fletcher’s school and have to get an FBI check) and the officer said that my prints are barely visible. He’s seen it before in chemo patients and the FBI will most likely kick back my prints, but just keep coming and he’ll reprint me for free for as long as it takes. It’s crazy to think that the drugs have actually taken my fingerprints. I guess if I wanted to go into a life of crime, this would be my opportunity. I’ve also been spending a lot more time with my cancer girl friends which is wonderful. It’s been a long time since I’ve hung out with “the girls” and I missed it.

Two somewhat big things are also going on right now that have me a bit on edge. I went in Thursday for my first post-treatment blood draw. I will be getting blood work every three months to look for enzymes in my blood that are present when cancer is growing. This is a time of stress for any cancer patient, but this first one I feel like is even more important. I have not had a scan or blood work done since before my mastectomies back in November. At that point, we knew that none of the chemo had worked. I’ve had two additional types of chemo plus radiation since then, but I just can’t have the faith in medicine that I did before the failure of those three meds. This is the first test I am having that tells me if all of this worked or if there is still cancer growing in my body. I see the oncologist on Monday afternoon and am hoping the results will be in by then. Monday will either be completely awesome or really, really bad. Let’s hope for awesome.

Also next week, I have my next surgery. This is the exchange where they will (finally) remove the tissue expanders and I will get honest-to-goodness squishy implants. After having what basically feels like two cereal bowls on my chest for ten months, I can’t wait to have some squish. I’ve been told repeatedly that this is an “easy” surgery and I really had that in mind when I went for my pre-op on Thursday. Turns out it’s a little more complicated than I planned. First, it’s a full on real surgery, not a “procedure”. I will be fully under which always freaks me out a bit, and I am already doing the pre-surgery wash routine. I have to shower each day, wash my chest with Hibiclens and dry with a fresh towel to reduce the risk of infection. I will most likely have drains again after this surgery, which I hadn’t been expecting, so I’ve been prescribed two weeks of antibiotics to take until those come out. I was also prescribed some pretty serious pain killers so I am anticipating not feeling too hot afterwards. During the surgery, my doctor will remove the tissue expanders and fit my implants. I went with round and they will either be 550cc or 600cc. My current expanders are filled to 570cc so they’ll be pretty similar. He will also smooth the inside of my skin which will hopefully reduce the lumpy look I’ve got going on and then he will remove excess skin. He wants to leave some to be able to make nipples but I told him I don’t have any plans for those so he can take what he needs to. I am comfortable with my Barbie foobs. Also, he is going to put in more cadaver skin to make the transition smoother. The skin will be inserted under my collarbones and go down over the implants to make it look like more of a smooth slope rather than the super-push-up that a lot of people can have with implants. There will be at least one more surgery for fat grafting – this will help with the lumpiness I’ve got going on with the skin-over-muscle as well as the general shape. Expanders and round implants both have a flat surface almost like a UFO. It works great if you’re getting augmentation and have breast tissue to camouflage that shape, but for reconstruction we all come out looking like we’re wearing sports bras. Super flattering.

I will be updating with the results of my blood test on Monday as well as after surgery.

On a happy note, I went in to get my hair cut this week and it is long enough for foils so I am blonde again! I didn’t realize how much I missed it. She didn’t cut my hair at all but I like it a lot better being blonde and I am finally at a place where I think it’s cute. It’s nice to actually like something about the way I look again.

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My Summer Vacation Part 2 – First Descents

So here we go with the second part of my summer vacation. Adjusting back to normal life has been more challenging than I expected. I’m not sure if it’s because I had two trips in a row or if this second one just impacted me so much. I’ve been writing like crazy since I’ve gotten home. My head feels like it’s spinning with thoughts and writing has always been my way to quiet those thoughts. I will follow up with pictures to add to both of these vacation posts, but for now I will just leave you with my words. From Monday…

On another airplane. One week has passed since I last wrote and it is almost impossible to express how many things have changed. I sit here so full of hope for my future, proud of my accomplishments and filled with love for so many people I didn’t know one week ago.

When I arrived in Jackson Hole, I discovered that three other participants had been on my flight. I was met by two First Descents (FD) people, one of which I already knew from Denver. I did not know she would be here so that was a wonderful surprise. We all drove back to camp, which turned out to literally be a campground called Broken Arrow. We had a lodge along with cabins for the girls and guys. I had no idea what to expect so this was great, especially after a week of running to the outhouse in the middle of the night. All of the campers (survivors) arrived over the next several hours and everyone was amazing. We had four guys and five ladies, all with different types of cancer. The youngest of us was 20 and I was the oldest at 38. We ate, talked, played with the volleyball and hung out together. We bonded right away. The cooks at our camp were amazing and made amazing food for us right out of the gate. After eating we had “campfire” which is when we have time to talk as a group, express some of our feelings and open up a little. Everyone at FD camp gets a nickname so we had to get that out of the way. The girls were Road Trip, Blossom, Keys, Crafty and Mallow (myself). The male lineup included Spouse, Monchego, Tugboat and Scandal. Our FD directors for the week were TBD and Pleezah, FD staff were Fruit Boots (who I knew previously) and Bandit. Prancer was our volunteer and Chunks was our camp medic. Camp cooks were the amazing Antelope Jamboree and Chamomile.

The camp schedule was cold breakfast at 7 (yogurt, cereal, granola, etc) followed by a hot breakfast from our cooks at 8. We would pack a lunch for the day and hit the road at 9 every morning. When we returned to camp after the day on the water it was usually around 5pm. We would change and play volleyball or frisbee until dinner at 6:30. Campfire was every evening when we felt like starting it, either in the lodge or down at the campfire pit by the river.

The second day, we went to Rendezvous/Jackson Hole Kayak School to get geared up and fitted for our kayaks. This was super fun and felt strange to be in such different equipment and in such a tiny boat. Our equipment included a sleeveless wet suit, booties, kayak skirt, splash shirt, life vest, helmet and of course a kayak. We named our boats and mine was the SS Marsh Mallow. We then went to Slide Lake to eat lunch, gear up, and learn what it feels like to be in the water. Our guides for the week were Doobie (who I called my camp boyfriend), Mama’s Boy, Wild Thing, Awkward, and a special guest appearance for our last day on the water was Bob Barker who was not a man and I’m pretty sure would be my BFF if I lived in Jackson Hole. For the first day on the lake we had Awkward, Doobie and Mama’s Boy helping us get comfortable. TBD and Pleezah as the camp directors were awesome kayakers and also helped as guides. If you are in Jackson Hole, I highly recommend calling Rendezvous and requesting one of these guides. I seriously can not say enough about how awesome they are.

When we got on the water, we first paddled around with our hands and just got comfortable with our boats. We didn’t even put the skirts on for a little while to just get the feel of things. The skirt goes around the kayaker’s waist and then has a gasket that snaps in place around the opening of the boat to keep the water from splashing in. Once that was in place, we were going to learn how to get out of the kayak if we flipped. To start this, they were going to tip us over and we would tap on the bottom of the boat to indicate that we were ready to come back up. Sounds simple. I felt pretty comfortable on the water and while I knew going under would be somewhat of a challenge I clearly underestimated what I would feel when it actually happened. My brain went from wow this is a beautiful lake to someone is trying to kill me in an instant. I’m pretty sure I was under for around half a second and all of a sudden I realized that kayaking is not a sport people pick up casually. This week was going to be hard. I had him try again and yup, just as bad the second time. Also, the lake has basically the effect of 50 Neti Pots so I got to look super graceful while being terrified. The third time I decided to try nose plugs which did improve things a bit. I believe Doobie told me I went from frantically slapping in complete panic to “kind of” tapping. Of course it took a good five minutes for me to psych myself up between each of these three attempts. Even though I was terrified, I was still happy to be having such a strong emotion. It has been so long since I’ve really felt anything, it was a happy experience to even be scared. I was getting the “this isn’t for everyone, you don’t have to stay in a kayak, you can totally do a raft and still have fun” talk. Things were looking grim. We decided to skip the turn overs and go straight for the wet exit. Normally for a wet exit there are four steps. Not sure that I can remember but it’s something like tuck, tap, tug, and get out of the boat (which they had another T word for but I can’t remember). So basically, tuck down close to your boat (not easy with tissue expanders), turn over, tap on your boat and if anyone is close they will flip you back over. If not, pull on your “oh crap strap” which is a handle at the front of the skirt which will pop the gasket off and release the skirt so you can swim out of the boat. Again, sounds super easy. I decided immediately that I would be skipping the tapping and waiting for someone to flip me over and planned to go straight for the tug and exit. Even still, these boats are snug. I wasn’t confident that my hips or feet would just slide out and was pretty nervous. After another five minutes and many reminders that I didn’t have to do this, he let me hold on to the oh crap strap and flipped me over. I pulled the strap and swam out of the boat so hard and fast that I was digging in the sand in about half a second. I flipped around and pushed up with my feet like I was under 10 feet or water instead of three and surfaced so fast I don’t know that anyone would have known I was underwater if they hadn’t seen it, so fast that I couldn’t even stand up straight. It was amazing. I felt the relief, accomplishment, and joy of all of that fear leave me. I laughed for a long time. I felt it all. I did it again. And it worked.

This was my first day in the water. I couldn’t believe how much I felt. I encouraged others who were having a hard time and watched them have similar experiences. I watched the people who had no problem going under and hanging out upside down underwater with amazement. I was so proud of all of us. We learned some paddling techniques and played Ultimate Sponge in the water which was super fun. That was our water time for the day. The guys from kayak school came to hang out with us in the evenings so we had about 20 of us at camp. We played volleyball every evening for an hour or two and then had dinner and campfire. This night, they gave out camp awards. There were three awards for us – The On Land Award which was given to the person who helps out on land and was a pair of huge and super tacky swimming trunks; The On the Water Award which went to the person who had beaten obstacles (of any kind) on the water and was a huge fish necklace we called Mr. Sparkles; and The Entertainer award which was a large felt black and white diamond top hat. The directors gave the awards the first night. The recipients must keep the award on them at all times (including on the water) and pass the award on at the next campfire.

The schedule basically stayed the same so I’m just going to talk about our time on the water for now. The second day we were on the Snake River for the first time. I was surprised how nervous I was to get in the moving water. They tried to teach us how to paddle down in the current and then go into an eddy on the side. Much easier said than done at our level as this included going from fast moving water, doing a 180 on the eddy line and having the boat face upstream in the eddy. To get out of the eddy you do the opposite, paddling at an angle into the current and letting it bring you around in another 180 to face the right direction. There were many swims as well as even more close calls. I managed to keep it together and not have to practice my wet exits this day.

Friday was our “off” day. We got up at the same time and went to hike at Jenny Lake. The Tetons are beautiful and we had a great hike. We ate lunch with an AMAZING view on the mountain. Then we headed back to town to walk around, shop and be general tourists for the afternoon. I also had a Face Time date with the family that evening so I got to feel the love from home and watch the kids eat Chick-fil-A with ketchup all over their faces while competing for my attention on the phone. I saw a lot of really close faces and got a reminder of what the walls and ceiling look like. It was super cute. It rained that evening so we weren’t able to play volleyball. Instead we played games. I discovered this week that I am really bad at Apples to Apples but apparently strangely good at Taboo. Or else I was just unlucky/lucky.

We got back out on the water on Saturday with a put-in on the Hoback River just above where it feeds into the Snake. While the team was working on moving the vans to the take-out point, we were able to get in the water and practice eddying over and over. I felt like I had just been getting the hang of eddying the previous water day so it was great to just be able to work on form for a while without any pressure. Mama’s Boy had us really work on turning our head and body to come through the turn which not only helped, but reminded me of my hockey days. That is what we always worked on to make the fast turns. It didn’t feel quite the same, but definitely a similar lean of the body and position. It reminded me of what I did before cancer. It made me feel like me again. When we got on the water, we had some small rapids and faster moving water. It was an amazing day. I had so much fun and was seriously disappointed when we got to the take-out earlier than I expected. These days on the water were filled with challenges, but also had areas that we could literally just float along and not have to paddle. We could talk to each other, joke, splash, and just have an amazing time. Again, no wet exits for me this day. I knew that meant something big for Sunday.

Saturday felt so bittersweet to me because I knew we were almost at the end. I didn’t want that to happen, but I also couldn’t wait to get back on the water. Sunday was our last day. It was much bigger water and our graduation. I went through some super fun rapids, definitely bigger than the day before. I was once again having an amazing time. And as the saying goes, pride goeth before a fall. After some rapids, I got caught by some swirly water. I know if I had just paddled it would have been fine, but I didn’t and I went over feeling like “well shit, I’m going swimming.” The problem came in when I didn’t have enough logic left in my head to tuck and couldn’t find my oh crap strap. It became even more of an oh crap, I realized, when you don’t have the strap. Now there are many other things I could have done – lean forward, feel the edge of my skirt and move up to where the strap is, grab the top of the skirt and pull, etc. What did I do? I opted for panic. I did try three times to grab the top of the skirt but wasn’t able to get my hands to purchase. Finally, as I was really panicking, I got out. I’m not sure if I finally pulled the top hard enough or pushed my body far enough out of the boat but eventually I was free. I sucked in a good amount of water and came up struggling pretty hard. Wild Thing was right there and Doobie had me hold his boat to tow me in. By the time we got to shore I was breathing a bit better and was able to empty out my own boat and get back in the water, albeit a bit shaken. But, all in all I’m sure I was under the water for a very short amount of time and just panicked way too much. The guys were right there and I was totally okay. As soon as I got my wind back I was ready for more. Plus, I got a good lesson on where to put my paddle when I start to tip as well as tucking forward so I can feel the strap.

Onward and upward, we had the big rapids ahead of us. I can’t explain how amazing and exhilarating it felt to see these big rapids in front of me, to plow into them and get pounded with water, and come out the other side. Actually, amazing doesn’t come close. This was me who four days ago was panicking just trying to be in the water. Me who not too many months ago couldn’t stay out of the hospital. Now I was comfortable, relishing the challenge, and even taking the dunking as a learning lesson rather than being afraid of the water. When we got the the Big Kahuna, I was the first kayak to volunteer to go in. It was unbelievable to see the huge drop as I got up on it, and go in being pummeled by the sheer volume of water. But I never felt afraid. I felt empowered. I felt like me.

We had several larger rapids the last day and I completely enjoyed each one. We had our graduation where we each went solo down a part of the river and through some rapids using what we had learned and our own desires to guide us. We reflected. I splashed and got splashed, I laughed and played and paddled all day. I was so sad when we got out of the water. We had a researcher at camp so we did paperwork and interviews after the river instead of volleyball. We had an amazing dinner and campfire.

The things that I can’t really blog about are the relationships. They are too complicated to explain and obviously I won’t tell people’s personal information. Every one of us had a different experience both in our cancer journey and in this week, but I don’t know if there has ever been a group that bonded so completely as ours did. Every single person there is like my brother or sister. Every single one. There were no clicks or issues between us. They are amazing in ways I will never be able to describe.

This morning I woke up and took a walk by myself. I went down to the fire pit by the river and cried my face off. I cried for this week being over, but mostly I cried for me. This is only the third time I’ve cried since my diagnosis. This week has made me remember who I am. Who I was before I was the sick, fat, weak, tired, bald girl. Before I needed help from everyone. Before I had to make choices based on my survival rates. Before I was scared all the time. Before I became a victim of cancer. When I was just me. Being on the water made me feel so many things, but the most important was myself. I know that cancer has changed me forever, but this week was filled with people telling me I can instead of I can’t. It was filled with me accomplishing things and making progress rather than being a patient. It was filled with belief, and hope, and more laughs than I can count. It was filled with people I love and goals attained. It was one of the greatest weeks of my life. It was more than I could have imagined.

P.S. Here are the pictures!

This is Slide Lake, where we learned wet exits and I got scared out of my mind but had a fantastic time. Not much to look at, huh?

And here I am in all my gear.

Getting instruction – here’s a shot of our whole group.

And here I am after the first dunk, gripping my kayak for dear life.

And reminding myself that I survived. I did get better.

I have to give props to Keys though, she had by far the best photos of getting dunked.

Then we were ready to get out on the water for real. We were some good looking survivors.

And the Snake River isn’t too tough to look at either.

There isn’t a much better way to spend time than being with friends on the water.

Here we are on our “off” day in the Tetons.

Back on the river, lunch break.

And more good times with amazing friends…

And our amazing crew when we got off the water

Our daily entertainment, watching the kayak crew tie up the boats. Or something like that.

Here is a shot of our semi-pro volleyball

And before we knew what happened, it was the last day. Bigger water, more splash fights and one of the best days of my life. I didn’t realize how much I smiled that day until I saw the pictures.

Oh, and I think this is me upside down. So that happened.

But it was just as much fun after the swim.

And we got to go in the big water. Yup, that’s me. Trust me, I am smiling.

And then, graduation. We went down a stretch on our own, reflected on the week and went in some rapids alone.

And then it was over. I was sad to get out of the water for the last time that week. But I know I will be back. With friends.

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My Summer Vacation – Part 1 Big Hook Wilderness Camps

I am finally home and starting to get settled. It is quite hard to find a rhythm after being gone so long but I will get there. I had high hopes of actually blogging while on vacation but that didn’t happen so I did the next best thing and used my flying time to blog on the airplanes. I am going to copy and paste my words here and take them for what they were when they were written. I will follow up tomorrow with the second part. Enjoy.

I’m sitting on the plane to Jackson Hole, WY. The first part my trek is over and it was amazing. Dad and I drove from CO to Red Lake, Onterio which is about a 24 hour haul. We stopped in some really interesting towns in the middle of nowhere, drove past more crops than I could count and had a largely uneventful drive which is a good thing. My favorite parts were the fields of sunflowers.

I have a bit of a romanticized view of Canada. If it weren’t for the healthcare and winters I would probably consider moving there. I could certainly handle all the hockey. From Red Lake, we flew on a small prop (9 passengers) into Sandy Lake. We took a quick shuttle across the island to our float plane (3 passengers) and up to Big Hook. I know I’ve said plenty of times how much I’ve changed over the past 14 months, but this part of the trip made it crystal clear to me. I have been afraid of heights my whole life. I wouldn’t go on a prop for pretty much anything. Before cancer, I would not have gone on this trip because of the planes required to get there. I thought that was a fear that I would be facing by going on this trip. But I didn’t face that fear. It was gone. Like I had never been afraid in the first place. Like it wasn’t even in me. Even when we flew home through low fog that we really didn’t have any business flying through, I wasn’t afraid. I obviously know that I have completely changed, but it’s bizarre to actually feel that difference.

We had our own cabin at camp and with only two of us, our own rooms. We had a boat that we used every day, staple foods in the cabin along with 100 pounds per person to fly in so we had ample supplies. We got up every morning around 7am. Somehow the foam mattresses in the cabin were the most amazingly comfortable thing I’ve slept on since these tissue expanders were installed. I was able to sleep on my sides and not be in pain which was amazing. We made breakfast of pancakes or french toast with eggs, bacon or sausage. We packed our lunches and hit the water. Central Lake is big, with several portages so we had lots of places to explore and the fishing was great. I had lures called the Evelyn Special (bright pink with silver glitter or silver metal flake to fisherman who apparently can’t say glitter) and the Fletcher Special (blue with blue metal flake – which we all know is actually glitter). The biggest fish I caught were a 22″ Walleye and a 41″ Northern Pike. I brought them both in on jigs and we don’t use barbs so apparently bringing that Northern in was somewhat of a miracle. I had about 20 jigs taken with their big teeth cutting the line so apparently I hooked him just right. Fishing was a blast and the days went by quickly. Before we knew it, it would be time to head back to camp, sit on our screened in porch, have a beer and make dinner. I don’t think anyone has enough of those days in their lives.

The entire area is beautiful. The wildlife is amazing too. We saw a bear, fresh wolf tracks, a mama moose and her baby, and a lynx on our trip. Also too many bald eagles to count. The birds would feed right across from camp where we took the fish guts and kitchen scraps and one night while sitting on the porch, the eagles got so excited about their feast that two of them flew together, locked feet and tumbled towards the water, breaking apart just at the last minute to fly over it. The sights which are commonplace there are seriously a marvel to behold.

The family that runs the camp is amazing too. Their son is close to my age so it was nice to have another young person around (if I can still call myself young?). They are all in the throws of wedding planning and it was really nice for me to listen to that. It gave me a feeling of simpler things to worry about than what I’ve been dealing with. In a good way. Happy concerns if you will. Mostly it made me think of how life would be like running a camp like that. Being in the woods for months at a time, getting away from everything. I’m sure it wouldn’t be heaven if I was in the middle of it, but it certainly looks like it would be close from here. I can’t wait until the kids are old enough to bring them along on experiences like this. I hope they will enjoy them as much as I do. I can’t wait to go back.

On the trip I also have had some other things to think about. My surgeon’s office called and they have scheduled my next surgery for September 19th. This means that I have to decide on what implants I want which really seems like a big decision to just leave up to me. My dilemma is that I basically have to choose between the shaped implant that has been newly approved by the FDA, which will apparently look better when I have my clothes off. Or the standard implant which will look better when I have clothes on. I ultimately made the decision based on our car logic. Eric and I have a rule that we never buy the first model year car because things always go wrong and they need time to work out the kinks. So, I decided to go with the standard implant based on if I won’t buy a brand new model car, I probably shouldn’t buy a brand new model body part. I thought the decision was made, but now apparently I have to choose the “profile” for the implant so I’m just going to talk to my doctor when I get home. I don’t really have anything to base a choice on and it’s not really an einie-meanie kind of choice. Implants last about 10 years so whatever I choose will be somewhat temporary, but if I’m going to live with it for that long I at least want to be sure I’m happy with my choice.

I’m pretty close to Jackson Hole now. I don’t even know how I’m going to find people when I get there, but I assume the airport can’t be too big. We are flying a 757 in which is bigger than I expected though. I am in the very last row, but don’t have anyone next to me on what appears to be a completely full flight so that’s nice. Here’s to continuing the adventure!

P.S. Here are all the pictures!

There were fields upon fields of sunflowers, which are about the happiest thing on the planet.

We found some hotels that gave a new meaning to the middle of nowhere. Here was the sign in one of our rooms. Probably not a shocker that we didn’t use the shower.

When we got close to Red Lake, ON the roads were just beautiful.

And these signs were everywhere. Beware of the angry moose!

Here is the “big” plane.

It wasn’t super roomy.

But it did have a killer view.

This is the pilot gassing up our float plane. He was young. Like, super young.

Again, not super roomy. But I did get to ride shotgun.

Camp! I took this from the boat but I like that you can see all the cabins as well as the windmills.

This is a closer shot of Nathan’s plane as well as a windmill. Between the windmills and solar power, we were told they didn’t have to use diesel all season! Go green energy!

I found a very happy surprise at camp in Shadow. She is an awesome dog and an amazing jumper!

The first full day we were out, we caught the biggest fish. Here are dad and myself, we each caught huge Northern Pike – mine was 41″ and dad’s was 42″.

We also saw all kinds of wildlife. I didn’t get a shot of the bear, but I did find this tiny frog on a portage as well as some huge, fresh wolf tracks.

One of the small islands had wreckage from a plane that crashed around the time that I was born.

The water was beautiful – and that is not the end of the lake in the picture, we rode right through there.

The portages had boats which made travel super easy (I’m used to having to carry a canoe with us)

But sometimes you have to get a little wet to convince the boat to come off the dock.

It’s worth it though because there are so many fish, sometimes you have a big fish try to eat your smaller fish as you reel it in.

It was an amazing week and we had an amazing pilot flying us out. Here was our view over the summit. I think I was the only one on the plane that wasn’t freaked out, but we made it safe and sound and I can’t wait to get back!

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Check 1, 2

So, here I am. The funk continues. I’ve had many of you calling and asking about me since I haven’t been posting. I am just finding it hard to be motivated in pretty much anything. I know this is common for cancer patients but it’s highly unusual for me. I just keep trying to take things one day at a time and I know that at some point I will realize that it’s better than it was before.

I am about to embark on a couple adventures. I’m looking forward to both and hoping that they help to get me back on track. The first is a fishing trip with my dad in Canada. We will be completely remote, no roads for 150 miles and will arrive via one of those tiny little planes that lands on the lake. Pre-cancer me would be terrified. We will be on the lake for a week in a cabin which is going to be super plush compared to the canoe trips we usually take. I will even have wifi so if you’re lucky you might see an update with amazing photos. I will return home for what I expect to be less than 24 hours and turn around to go on a First Decents trip to Jackson Hole for kayaking with a group of survivors. I will be gone for almost three weeks and at this point I am planning to not see the kids between trips because I expect that would throw them into a complete tizzy.

Finances continue to be scary. Any donations are much appreciated. Eric got denied unemployment benefits. A very basic description of events is that he was forced to quit his job several months back. The words “cancer pass” were used. More than once. But the end result went down as Eric “giving notice” rather than being fired. Then he was hired immediately by a second company which unfortunately went under when the City of Denver did not renew their contract. So legally, he was not at this second job long enough to be considered for unemployment and after an investigation of the first company, their decision was that he left the job and therefore is not eligible. I don’t talk about politics as a rule, but this situation sucks. The new job is going well but does not offer benefits. My parents have been covering these for us which is not easy for anyone as they are very expensive. We’ve been trying to get benefits for the family (obviously my options are very limited) and Eric has been turned down for ridiculous reasons. We finally found coverage for him and Evelyn which will start that policy next month. Fletcher and I will go on Cover Colorado which is state insurance for people who can’t get coverage anywhere else. The benefits are actually great, but it is pricey. This goes away at the end of the year with the healthcare reform so we will have to figure out what we are going to do then. One thing at a time.

In addition to normal life, two people I know have died in the past month from their cancer. It sucks. I’ve got to get my head right and just appreciate the time I have. I hope that will be a long time, but honestly none of us know. The American Cancer Society is looking for participants for a study. This is for people who have NOT been diagnosed with cancer who are between the ages of 30-65. The study will follow you for a number of years and requires a blood draw at the beginning followed by questions to fill out every few years. It’s not an invasive study and can help them figure out who is getting cancer. ACS studies are awesome. Their first study linked cancer and smoking (which seems so obvious now, but they had to do a lot of work to prove it). The second study linked obesity to certain cancers. This one is looking at genetics, lifestyle and a bunch of factors. It’s called CPS-3 for Cancer Prevention Study 3. They need a lot of people. You can make your appointment to get signed up by going here: Click on “where to join” to find locations in your area.

School started this week and I officially have a kindergartner. It’s insane. He hates school which I expected since he’s been in the same classroom with the same teacher for two years. New school where he doesn’t know anyone is a big change. I love the school though and they gave us a full scholarship for Fletcher to attend full day kindergarten which usually costs $400 a month. It’s really amazing. It is a Montessori charter school and I love that he gets to make so many choices about his day. I know that he will appreciate this as he gets more comfortable in the environment. Also, Evelyn up and potty trained. Even at night. No more diapers is awesome. I take no credit as clearly she decided to do it. My kids are super stars.

So, to sum up… life is still kind of passing me by mentally but I hope for improvement soon. And sign up for the study!

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Bring on the funk

To cut to the chase – the funk continues. My meds have kicked in and I definitely feel better than I did before, but I am not myself yet. Finishing treatment is hard. I think this is true for most people and I don’t know if I’ve made it harder on myself by my lack of ability to cry over things or if this is just the way it will be for me. I think that during treatment we go into warrior mode. Dealing with things isn’t as important as being active in the fight, beating it. There are so many tests and treatments that are painful and I’ve been telling myself for a year to suck it up. No matter what things will feel like when they are happening or afterwards, don’t complain, don’t make a face, just take it. I don’t have any option so just deal. You can’t be a wussy when you’re facing cancer. It’s just a fact. And now that is supposed to just be over. I can go back to “regular” life. I’ve realized that at this point, I don’t know what that is. And I think that is the crux of the problem. I know that I am a different person than I was before cancer. But that’s the rub. In normal life, most people don’t ever have to become a different person. We don’t change easily. We can adapt over time, but in the scheme of things, a year is not a lot of time. And the changes are drastic. They happen so quickly that the world around us isn’t aware of the changes and expects us to go back to the person we were before. But that can’t be. That person is gone. So here I am, unsure of what I even am at this point. Trying to go through my everyday life in many ways like nothing has happened. It just doesn’t work inside my head. I know it will take time to figure things out. I feel a bit like a teenager without the benefit of being able to lock myself in my room for months on end brooding and writing bad poetry. I get to figure it all out while participating in life to the greatest extent that I can. So my body is going through the motions while my brain tries to wrestle with huge issues. Saying all that, my brain is also experiencing a huge handicap from treatment so I am still unable to remember anything which is super frustrating. It really is like going through the motions without a brain. I forget the most basic things, I can’t introduce friends to each other because I can’t remember names of people I’ve known for years. It’s not good.

Aside from my inner turmoil, lots has been going on. Eric started work last week which is great. But we found out that they only pay once a month so that puts quite a squeeze on us waiting for a check. He filed for unemployment when he lost his job but it is still “pending” so we have no idea when any of that money will (or if it will) come to us. At this point we don’t know how we will pay the mortgage this month. It’s scary.

The kids have both been doing well. Fletcher learned how to ride his skateboard standing up last week and has been working on dropping in on small transitions at the park. The apple doesn’t fall far from the tree there. Evelyn has been working on potty training and is a champ, she’s still wearing pull ups for the fashion of them (at least until the package is empty), but is using the potty all the time. Our kids are awesome.

Hope for Young Adults with Cancer had our first fundraiser last weekend. Trivia with Geeks Who Drink. We ended up making $477 which is fabulous for an event we didn’t even have to do any work for! We had a lot of people come out and it was really a good time. I was super happy with the event.

Saturday and Sunday I went to a First Decents event here locally, they called it a Floatilla. We camped overnight in the mountains and floated the river (which included rapids, but was mostly floating) Sunday morning. It was a really fun trip and nice opportunity for a getaway. FD does adventure trips for young adult survivors so it was nice to see some people I had been able to visit with at Stupid Cancer meetups and meet some new survivors. Unfortunately it rained almost the entire trip, and it was cold, but I would do it again in a heartbeat. It is always nice to be around other people who have had similar experiences. We were worried about the cold water in the rafts but they told us something like “You just go numb and it’s fine”. Not only was this true in the cold river, it’s kind of how I’m getting through life these days.

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Dark days

Well, as I’ve said many times before, if I’m not posting that usually isn’t a good sign. That holds true yet again. I had many, many warnings that the end of treatment frequently is a lot harder than anticipated. I didn’t think it would apply to me, but clearly it does. I started taking my anti-depressants again and am waiting for them to kick in. It generally takes about two weeks so I’ve got a ways to go. Life is pretty much a shit sandwich right now but of course I’d rather be in this one than be told I’ve got cancer again so I’m trying to keep it in perspective.

Eric was able to find a job but he doesn’t start until next week. That will be right at about two months without a paycheck which I’m pretty sure would put a strain on anyone, but holy crap. It’s tough. One of our friends has offered to match donations (see the make a donation tab) so if you are inclined to help us, it would count for double right now. Anything helps. Thank you!!!

We’ve had to find our own insurance with Eric losing his job. Luckily we were referred to an insurance broker who is helping a lot, I knew no one would cover me but I was shocked that Eric actually got declined as well. So that has become a huge hassle, not to mention an expensive one. Many thanks to mom and dad for helping us pay that premium! I will be going on Cover Colorado which I really wish I had known about a long time ago. We wouldn’t be in anywhere near the amount of debt we are now if I had switched over when I got diagnosed. But, I can’t do anything about it now so I’m trying to ignore it.

My next scan should be in September which is obviously a huge source of stress. I have not had a scan since before surgery so until I get a clear one I am not “cancer free”. The thought that it could still be in there weighs on me heavily. Of course they told me they got everything with surgery and I’ve had chemo and radiation since then, but knowing that the first three chemo drugs didn’t work leaves me less than confident that the others did. I know that there is a possibility of radiation not working (very slight, but so is chemo not working) so I can’t help but think about that scenario as well. I just never dreamed that treatment wouldn’t work and now I have to face the possibility that it continued not to. I know I should think positively but it’s hard to do that right now.

Plus, along with everything else I just feel depressed. I don’t know any better way to put it. There is nothing specific which is really shocking considering everything going on. That in itself is concerning since it seems like I should care a lot more about everything than I’m able to muster right now. It’s just an underlying feeling that I have all the time right now. I don’t want to go out, or be productive, or really anything. I’m more tired than even my normal run down self and I would like to just stay in bed for a few days I think. But I know that’s not going to happen.

To top it all off, I feel guilty. I’m done with treatment. I should be happy. I have several people in my daily life who don’t get the luxury of being done. Ever. I have more than one friend on hospice right now. It is tragic. Yet I can’t get happy. I don’t understand.

From what I’ve been told by multiple people, this is a VERY common part of treatment. At least I’m in good company.

On a happier note, for those of you who may be local to Denver, Hope for Young Adults with Cancer is having our first event – next Thursday, July 25th at 6:30pm at The D Note in Olde Town Arvada. We will be having a Quiz for a Cause. Geeks Who Drink will be hosting trivia – $5 to play, the winner gets a cash prize and the rest goes to Hope4YAWC. Get a team together and come join us!

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Life and new problems

Well, this past week has been nice in that I’m not running back and forth to the hospital once or twice a day, but I did have four appointments so it wasn’t quite like a normal person’s schedule.

Monday I had my first post-radiation fill on my right side (remember that one had to be taken down to get the proper angle for radiation). The fill went fine. My plastic surgeon didn’t look too happy at the state of my left chest tissue, but we are pretty confident things will be better in a few months. I go back again this Monday for the last fill. The pain this time was definitely better than when I was originally filled and it didn’t feel like I got hit in the ribs with a baseball bat so that’s always a plus. I was quite sore, Wednesday was the worst day, but now it is pretty good. I’m ready for Monday.

Wednesday I went in for my last lymphedema therapy appointment. They generally see people through treatment and the week after. The hardest part of ending therapies is knowing I won’t see the people as often but I know I will keep in touch so I’m trying not to let it bother me too much. One of my therapists is interested in working with us on HOPE4YAWC so that’s exciting.

Thursday I met with my oncologist for my 8 week post treatment visit. Everything was good. I told her about the pain I’ve been having in my right knee and she had an idea that it might be a baker’s cyst. Her exam supported that and they scheduled an ultrasound for Friday morning. Everything else was good and I made an appointment to see her again in three months. That seems insane.

Friday morning (yesterday) I went in for the ultrasound at 7:30am. I had not been worried about it, but I was amazed how laying on the table hearing her take pictures made me feel. Much too similar to being diagnosed the first time. Cancer plays such crazy mind games. This was really my first taste of the everything-is-cancer syndrome. The tech wouldn’t tell me anything which is her job, but it didn’t help my internal struggle with knowing everything was fine and the irrational what if it’s cancer thoughts. I couldn’t even see the monitor so there was no way to know what she was taking pictures of. But I could tell that she went right to the problem area immediately and took a bunch of images so I figured she must have found something. Or maybe she was just taking pictures to show that there wasn’t anything. See? Mind games. Sigh. Plus, they told me that the films usually get read in about 24 hours and then I’d hear from the physician who ordered the test. Does that mean I have to wait until Monday???? I called the nurse at my oncologist’s office and left my nurse a voice mail. I told her that I totally understand that this is not a high priority item, but if she hears anything I would appreciate a phone call just so I’m not having cancer thoughts all weekend. My wonderful nurse called at lunch time and told me that while she couldn’t give me details or tell me what they are recommending, she did get the results and it looks like a cyst. So while that’s not great, no cancer is fabulous. No one else called so I’m assuming I will hear more on Monday about what they want to do about it. It’s kind of nice to have normal people problems for a change.

In other news, Eric is still job hunting. He’s had some good interviews and one offer dependent on a final interview this week (isn’t that weird?) We are hoping for a couple offers this week so we’ll see what happens. Fingers crossed everyone.

Our current insurance ends Monday so we’re in the process of switching everyone over to new policies. It’s always fun. We did find a great insurance broker and were amazed at the coverage we could get that was affordable. If you need a referral for that, just message me and I’ll send you his info.

Fletcher also had a bad reaction to some medication this week which made him absolutely insane. I spent about four days trying to keep it together before we figured out it was medication. At least we know what it is, but having Fletcher running around with about 10 times his normal energy level (which is already high) and zero impulse control was not fun. None of his therapists knew what to do. I’m glad that’s over.

In my spare time, I’m working on plans for Hope for Young Adults With Cancer, finding events we can become part of and working on ways to get our name out there. I’ve also been trying to work on our Disney vacation planning. This is a bit of a dream trip right now as I have no idea how we’re going to pay our mortgage let alone go on vacation, but we were forced to cancel last year’s trip since I was in treatment. Then we were going to take a trip when I finished treatment but obviously there are no vacations right now so hopefully by December we’ll be able to make it happen. It feels good to dream and hope for something anyway. When my days were the darkest, thinking about Disney was really a big part of what helped me through it. Strangely, when I thought about my happiest place it was the parking lot at EPCOT. Hearing the hum of the monorail overhead and looking at the park where I knew everyone was so happy. I would really like to get there again.

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