All things personal

Last post was all medical - this is all personal and fun things.

Since surgery I have felt very good overall which has been nice. I started to drive 12 days after surgery and that allowed me to be free to do what I like and go to the store and all those things. Went to a movie, went to my friends sons birthday party and did a wagon ride, dressed up for Halloween, went to the last summer farmers market at Wheeler Farm, took the boys (Ben and Jack) out trick or treating in my sisters neighborhood (which was really fun), turned 34, got the keys to my new place and have started to slowly move in.

Social Butterfly

My birthday usually is a big deal for me but with surgery and the whole no eating fat thing I kind of was a downer about it for a bit. I never realized how food centered a birthday is until I couldn't have anything fun! In the morning I met up with little Ruby, her mom Ali and her sister Jane for some acai bowls and healthier food. It was fun to be goofy with the girls and of course to see sweet Ali. You can read her blog here. Since I got the keys early (got them on the 1st and was planning on getting them on the 5th) I had some friends over to the empty place that night and just ordered pizza for them and such. It was a lot of fun to have everyone over to see it.

Look at this pretty cake my friends got me - even though I couldn't eat it until the next day. My wonderful friend Elise also went out of her way to make me a sans free birthday dessert - strawberry shortcake. It was delicious!

Since then I have been slowly moving things in and we have movers coming tomorrow to load up my storage unit. I'm a bit nervous to see what I have in there... some of the stuff has never been used so it will be like Christmas! I'm still deciding on what I am going to do with all my Sweet Janes stuff. I'm torn on it - want to keep it but also don't want to just store things to store things. I am also not sure I want to close that chapter all the way. We will see. I have until the 30th to have the storage unit completely cleaned out.

Besides moving I am going to try and do some fun things before life gets shaken up on the 10th. Not sure what, but definitely will do something each day not medical or moving.

One thing I want to acknowledge is that there is a saying that you never know your true friends until you have to ask them to help you move. Well, I am overly blessed in the true friend category. I have too many helpers! How is that possible? I sure do love my army.

Surgery

It has now been 4 days since surgery and I am attempting to type on my computer - so far so good but can tell it will be short lived.

With me for 4 major inpatient stays 

Right before surgery I had to have a quick CT scan so there was a bit of a shuffle which helped keep my mind off of things. I definitely was emotional though. My friends sent me some great things to keep me distracted though - pictures of puppies, videos of my favorite little guys and then of course Justin Timberlake. Before I knew it I was out, didn't even get to the counting down part! 

When I woke up I had this insane pain - in the heel of my foot! Like crazy pain, enough that I was kicking and screaming. Yes, screaming. I was relieved at that moment that I hadn't lost my ability to talk. But man my foot killed. It was most likely propped up at a weird angle for the 5 1/2 hr surgery and then once it moved and got blood flow it freaked out. Me screaming also meant that I was able to swallow as well. I then smiled and most of the smile works, just a bit of my lower lip is stunned and should hopefully come back. This happened with my last surgery and it took about 2 months to come back. Knowing that it will most likely come back makes it easier to accept.

Before surgery to compare

Before surgery to compare

WARNING - SCAR PICTURES BELOW!

Surgery went really really good. Dr. Monroe said he believes he got every tumor out as well as any affected lymph nodes. He dissected the old scar as well and was able to keep the new scar minimal. I made him take a picture of the tumors and show me them when I was awake - pretty insane. He was emailing them to me but somehow that got messed up. I hope to get them tomorrow to post. It was pretty interesting as some of the lymph nodes and tumors are black while the others were not. That's the melanoma in them. The scar is larger but the sutures/stitches are tighter so I am thinking it will heal even better than my last one. I have a drain that is working pretty well, having some minor issues with it but nothing too big.

Day One - right after surgery

Day One - right after surgery

Day Two - still in the hospital

I was in the hospital for 2 nights and now have been home for 2 nights. My oxygen level tends to drop when I sleep while on pain meds so we decided I should have supplemental oxygen at home for when I am asleep. It isn't too bad, I just hope it isn't a permanent thing.

Day Three - At home after a shower

Day Three - at home, after a shower

The pain isn't too intense - it is there for sure, but not what I had expected. There is a lot of surface skin nerve damage so I am not sure I am truly feeling all the pain that I am actually having, which is one benefit to nerve damage. I have been keeping up on a schedule for my pain meds and things haven't been too rough. I have some limited range of motion but I feel a lot of that is swelling and we can work on it to improve it. Swelling has been the worst the last two days so I have been trying to drink as much water as I can and move as much as my energy will allow - which hasn't been much. I have been sleeping a ton. I know you heal when you sleep so that makes sense, but man I'm exhausted.

This came in handy for my new diet! Just no chocolate dipped ones for me this time

They had to cut one of the bile ducts in that area that regulates fat in your blood stream so because of that I am on a NO fat diet. Like zero fat, nada. Not so easy to do when you can't chew much since most of the fat free (natural) things are vegetables. We are finding recipes and tricks though and for now the nonfat yogurt, cereal, milk and fruits have done ok. Basically on a dairy diet. Like I said, we are working on it.

And this note made me chuckle

And that is about all I can handle of holding up my arm to type, but I feel like I did a pretty good job! 

September 4-23rd - All the things!

I’ve had a pleasant few weeks. Still keeping busy, living life. Because of that I (again) haven’t kept up with my blogging updates!

I went to a pie social and ate all sorts of pie, got a massage, had lunch with many different people on different days, family dinners, coffee dates, went to the fair per tradition and held a 7day old goat – heaven, ate fried cookie dough (at the fair of course!) went to a makeup class for cancer patients (scored a lot of good free makeup!), lots of farmer’s market visits, brunches, birthday parties, learned how to make my favorite aunt Annie’s cinnamon rolls – so many things!

 

My dad celebrated his 71^st birthday on the 8^th. It is wild to me that he is 71, he doesn’t look or act how I imagine someone who is that age. Not sure if that is a good thing or not? We had a family dinner and a giant cake to celebrate.

Sarah (my sister) and I ventured out about 45-minutes north to Brigham City Peach Days. Expectation: peach everything; peach pies, peach cobbler, peach drinks, peach candies, actual peaches. Reality: basically a fair like event with one stand selling peaches and then a random peach flavored thing here and there – maybe 5 things. So, not what we expected but it was still a lot of fun and I would definitely go again. We had some tasty Dutch oven dinner and peach cobbler (one of the only real peach thing we saw outside of the actual peaches). I want to do a Dutch oven cookout or something, maybe just dessert. I think that sounds fun!

My sister and I also went to an Indian cooking class where we learned how to make butter chicken, aromatic rice, pickled eggs Indian style (forget the name of this dish), mint and raisin chutney and my favorite, naan. It was a lot of fun and man there are a lot of spices and ingredients to each dish! The instructor tried to kill us with a Carolina reaper pepper but we survived. I don't do well with spice but it turned out good! I could go without the eggs, but am happy to have tried it all and now know how to cook some Indian food from scratch! 

I had my liver levels checked (on the 14^th) and the levels are down a bunch! Both are under 100! Best news ever. This means the liver meds are doing what they are supposed to and I can stay off of the steroids. Yep you read that correct – I am officially off of the prednisone!! It is pretty great. I have felt pretty good since being off of them, just low energy. I am able to not use a sleep aid now and my shakiness (mostly in my hands) is much better. I do have some skin reaction to the new BRaf meds but not bad enough to take steroids again, and truly hope it stays this mild and I can tolerate it. 

 

My last 5mg dose of prednisone! 

A long way from 120mg!

My dear cousin came in town to play (and deal with some family stuff) and we had some good times. We had a delicious dinner out the first night and then followed that up with a ReAl Salt Lake soccer game. It was a sister double date – her sister and my sister joined us. It was a lot of fun even though the game kinda sucked. The next day we went to the Wheeler farmer’s market and then headed up the canyon for brunch and to see the amazing leaves changing. It was beautiful. After brunch we walked around Silver Lake, an easy local hike (walk). It was so great to have her here to play, and I am so happy that she and I have become close in the last few years. We’ve both had some major stuff happen to us and we just connect on a deeper level.

 
              Sisters photoboming sisters - priceless!



 

Mandy’s (my melanoma soul sister) family invited me to go to a paint night with them. Paint Nite is where you head to a restaurant or bar and everyone paints the same picture step by step while being able to drink or eat. The painting was “Rainbows and Dragonflies.” Dragonflies is how Mandy said she would come back as to come say hello so it was only fitting. It was a lot of fun and it is great to see how different everyone’s painting comes out – even though we are painting the same thing. I was happy with mine; the colors are much more bright outside of the bar lighting.

Mine is on the left - Shaundra's (Mandy's momma) in the middle - and family friends on the right

I am truly lucky and amazed each day to have such great and fun people around me. Life is too insane to let it conquer all aspects of your life – you have to live a bit and enjoy yourself! I have worked hard these past two months to live it up and I feel like I am definitely succeeding. I have a good friend’s wedding tomorrow that I am looking forward to and then just spending time with my army. Man my blogs get super long when I don't do them often! Goodness!

Staycation

I spent the week up at Snowbird, a ski resort that is open in the summer with activities and such. My best friends own a week long timeshare there and are so gracious to allow me to crash with them for the forth year in a row. Every year it has been so different as so much changes in a year.

It is so great to just escape the valley and heat and reality to a serene beautiful mountain where you can just zone out, go swimming, watch for animals or just hang in the room.

Top of the tram at Hidden Peak - 11,000ft; Salt Lake Valley straight ahead (Top), Heber (Bottom)

Jack is snorkling his heart out in this picture right above my feet

Morning routine

The view outside the room

As the week approached I didn't know how I would feel or where I would be in treatment. Orignially when I was on the Niv/Ipi combo I was scheduled to get my infusion half way through the week so in my head I was going to only be there for a few days. Obviously that has changed and I was able to stay the whole time - not sure they were truly expecting that but I did it! I only had a couple days and moments that I struggled but was able to pull through it. I used the spa pool and solarium a couple times and just relaxed and thought through things. My friends are crazy busy and have multiple small business constantly going so they had to come down to the valley almost everyday so I used that time to just relax and recoup. It was fun to watch their two boys enjoy their time on the rides and just be boys. They are getting so big and becoming their own little beings. It is fun to watch and just live in their simplicity.

Tell Jack what a selfie is...  

Ben and Anton in the room hottub loving life! 

  

Popsicles, SpiderMan, Selfies and Movies. This kid has my heart

We had groups of people come up practically each day/night and so that kept things lively and not so stagnant. Heading into the week I was worried I would hold back my friends from really doing things up while they were there since my stamina is non existent, my sun sensitivity is back and I'm extremely low on funds (I couldn't do the rides even if I wanted to anyways...) I don't think I got in the way, but I will never know for sure. Prednisone was a factor I know that, I ate everything! Ha! I told my friend she shouldn't have left me alone during my witching hours of 3-5pm... the chips just disappeared I swear! I am doing better at regulating it all but it is still a bit out of control. I'm hoping that once I taper lower I will see the water weight drop off and then I can work on the chip/treat weight.

My sungear in full effect! 

Yes, this happened. Ha.

At the pool in the shade, under an umbrella. Also, where is the tumor? 

My life isn't that bad if I step back and look at the giant picture. I just spent a week at a resort with my great friends because they are that nice to include me. When I started to have a meltdown, I went to a spa and stared out a wall of windows to a mountain side that had a family of deer on it. I was healthy enough to go for a week and enjoy as much of the time as I could. I watched two little boys enjoy all they could and play and swim their little hearts out. I spent time with my friends that I don't see too much cause our lives aren't intertwined as they once were - I miss those times but know that these times are just as important and have their own value. Was it hard to realize that I am now on the sidelines for real? Yes, but that doesn't change how I care about them as my friends and it just makes the memories a little different and may take a little more effort. They are worth the effort. Again, my life is actually pretty good, I just have this whole cancer bullshit to slap me down a couple times.

I am thankful for what I have, and for my staycation.