Follow-Up

Just a brief post today. I wanted to post what my surgeon told me last week when I went in for my follow up appointment. He checked everything out and concluded that everything seems to be healing quite well. He also was able to give me an official official diagnosis. So, before surgery, all we knew was that I had Renal Cell Carcinoma. A rarer type of cancer. After Pathology, it was concluded that I had Type 2 Papillary Renal Cell Carcinoma. 80-85% of Kidney cancer patients have what is called Clear Cell RCC. Those few who have Papillary, typically have type 1. Because I have type 2 papillary, this means I have a rare type of a rare type of a rare type of cancer. No that was not a typo. Type 2 also means it is more agressive. Seeing as all of my treatment has been with the Cancer Care Alliance, I am now a general contributor to the Fred Hutchison Cancer Research. I'm certain that my uber rare cancer, and rare gender and age, will give them much to ponder about. One other thing my surgeon informed me of was that the drugs I took before surgery usually have no effect on Papillary RCC. Gee, I'm just a friggin' enigma, aren't I?

Well, I also visited a nutritionist a few weeks back. She was very nice and helpful. She helped me come up with a plan on how I can eat better to try to gain and maintain a healthy weight, which is possibly the only thing I can think of that lead me to have cancer. She didn't want to overwwhelm me at first, so it's very basic stuff. She advocated smoothies and introduced me to the word "spelt." I have yet to try it. (This was mainly in regards to spelt tortillas.) I'm doing ok but it's taking some time adjusting to all of it. One cool thing is I have been making new meals, and from scratch! I am actually enjoying myself! I downloaded an app for my phone from allrecipes.com called the Dinner Spinner. I know it's in the Android Market for free. If you have access, download it! I bet there is one for Apple too. It has been quite useful. :)

I have an appointment with my doctor I think in like a week, so I'll update again then.

Recovery

I am so sorry. It has definitely been far too long. Anything I say now seems boring and meaningless. I've been without internet for a few weeks but have resigned to using my cell phone to write and post this. First though, I want to say I forgot so much about my hospital stay. Like, my friend Katie Karr came and visited me on her breaks because she actually works in the hospital.

After I left the hospital, I went to my parents house. Even though I've been living with my sister, I had people at my parents house to help me and keep me company. It was pretty rough at first. I spent all my days just lying in bed. If I needed to use the restroom, I would have to shout across the house (it's not very big) to have someone come help me sit up. Even that hurt at times. I ended up watching a lot of DIY and HGTV They actually have shows on in the middle of the day. Sleeping was a bit rough. Y'see, my parents house is totally full. 4 bedrooms, 5 people. During my stay, i slept in my parents bed with mom, while dad slept on an air mattress in the livingroom. My mom said the first night she didnt get any sleep. Well, that's because I was in a lot of pain. It was not fun, not that I think you're imagining it was. Things got better. I started finding ways to roll without much pain and to this day, I clasp my hands around my left knee and rock myself up into a sitting position. It took several tries for the first little while. I probably looked like I was having some sort of fit. One hard thing about my stay was the constant badgering from my dad to "get up and move." The reason this was frustrating, and I expressed as such to my dad, was, Where was I to go? I had nowhere outside of the house to go to. The weather was poor, and the only place inside to go was the livingroom and back. That's a little less than 20 steps there and 20 back. Not really scenic either. But at the beginning of April, I felt it was time to move back in with my sister, give my dad his bed back. He was certainly happy about that. My cats? Not so much. They would spend the whole day with me just sitting and sleeping in that bed. I have several videos of them play fighting. Maybe I'll post them sometime.

As far as my health goes, I've had some interesting times. My breathing was really hard to do at first. There were several times I could only take in short breaths. Also, just a few weeks ago I went to the doctor because my leg was hurting and it was a weird pain. I figured I would be fine, but all my family was worried it might be a blood clot. Well, in my family, we take blood clots very seriously. My older sister did die of one afterall. So I had an ultrasound done on my leg. All was well. Very interesting experience though. I still have a great deal of pain throughout my left side. Dr. Lin said it'd be about a year until all that pain went away. :( Not cool. Sneezing and coughin have been horrid. I have to clutch underneath my left breast and press firmly to keep from having searing pain. Trust me, you don't want it. My incision has actually been healing quite nicely. Occassionally it'll feel like it is being ripped apart, but it has been feeling much better the last week or so.

That's all I can think of now, but I'm going to update soon about my latest Dr. appt. and my meeting with a nutritonist. sorry to keep you waiting on news.

Surgery and Recovery Part 2

My Stay in the hospital Wednesday March 2nd-Tuesday March 8th



I don't remember when I woke up. With all the drugs I was on, everything is hazy and my timeline is a mess. I know it was Wednesday, the same day of the surgery. I think my parents were there when I woke up. I could be mistaken. Here is what I can tell you though. My mom was there at some point and I asked her to give me a pedicure. I remember her doing my left foot and getting to my right big toe, but I must have passed out because I don't even know when she left. I know my dad brought my aunt Diana over. She works at UW, so it's not like she had far to go. No idea what we talked about. I had been out of it for a while when someone came to my room. It took me a bit to figure out who it was. It was my foster sister Vanessa. She was like "Look who I brought!" and there were people behind her. I remember I was about to say I had no idea who they were when it dawned on me it was her two sisters and mother. One of her sisters had a baby with her. Wow. Lots of people. To be honest, it was a bit overwhelming. Good thing that baby was quiet the whole time. Vanessa's sister had cancer several years ago. I can't remember what type, but she was only like 13 or 15 at the time. I remember having visited her in the Children's hospital (Ronald McDonald house). We talked a bit about cancer stuff that only cancer people can understand.



Like I said, I sort of can't remember the days that things happened and it's all jumbled in my head. I know my cousin Brandon (who happens to be my Home Teacher and Elder's Quorum President) and a girl in my ward came to visit at some point. Once again, no idea what we talked about. However, the girl from my ward that came, she was wearing a mask because apparently she had a cough. The nurse came in and totally got upset with her. Really though. If you're sick at all, don't visit a surgery oncology ward at the hospital. Think it through.

Three girls from my ward came at another point during my week. I feel horrible and can only remember Renae being one of them. And then I think there was also another group of three girls from church... Jen and Marybeth and ... Amy! Ha, I remember that one. Jen's dad is a big Guru surgery doctor type, so she understands.



My sister and our friend Jeff came to visit me. Who knows what chit chat we were involved in, but I had a scary moment. I had lots of phlegm stuck in my throat and with the pain from my stomach and side, I couldn't cough it out. I was choking. I tried sticking my fingers down my throat to pull it out but that didn't work much. My sister got up and grabbed a nurse. I think eventually we got the phlegm out, but I had entered complete panic attack mode. I couldn't breathe. I was freaking out, I was so scared. They placed the oxygen tube in my nose to give me air. I think I stayed on that for a couple of hours. Once things settled down, I told my sister that I was sorry. I didn't mean to scare her. She admitted to being worried.

Over the next several days, I had some visitors. My aunt Lorena came and stayed for several hours on Sunday and just helped me do little things and chatted with me. She showed up just as I was getting up to go for a brief walk. I really enjoyed having her there. I don't even remember all that we did. I do remember her giving me an awesome gift though.



As most of you will remember, Vlad was the name I gave my tumor. Green is the color for Kidney Cancer Awareness. And why is it a football? Well, the doctor said after the surgery that it ended up being the size of a football. Crazy hu? So I just thought that her gift was hilariously perfect. Great thought put into it.

I had several nurses and people that worked with me. I definitely do not remember what they all looked like or what they did. I DO remember two people. One was this guy who would help me sit up, reposition my pillows, get me water, simple things like that. He was great. He always called me sweetheart and hon and stuff. Normally, I HATE it when people say things like that, but I could tell he totally cared about taking care of me. Don't remember his name and I might be able to point him out if I saw him.. (Wow, a whole week, you'd think I'd remember). Unfortunately, the one person I remember a bunch about, Raine, I'd rather forget. She did the same stuff as the guy, helping me with those things, but I hated her. She bugged me so much.

I believe it was Sunday or Monday, and I had another panic attack. It wasn't as bad as the first because I was monitoring myself and trying to calm down my breathing, but I was still freaking out and couldn't breathe. I told her I needed oxygen and she said no. Ok, now I understand nurses and doctors know more and should tell patients no at some point, but the way she did this was so rude. It basically came off to me as "I know you can't breathe, but I'm not giving you oxygen, so you're now going to die." When my aunt Lorena was visiting, an ice pack leaked all over my bed. Everything was wet. I was so numb and drugged up that it took a while for me to notice. I don't remember this, but my aunt told me later: This nurse, Raine, came in to give me a new ice pack (life savers, ps) and my aunt said she was like taunting it in front of me. She was waving it in front of my face like "Want an ice pack? Yeah? You really want one? haha I have it" My aunt had to yell "stop!" at the nurse because apparently my eyes had fixated on it and I couldn't take my eyes off of it no matter what I tried. She said it was freaky and so she has a poor taste for that nurse as well.

So, as I'm writing this blog, I was talking with my sister, and she reminded me of a ton of stuff. I had only remembered her coming that one time, but apparently she visited me like 3 times. ha ha wow do drugs make you forget or what!? Once she started telling me of stuff, I started to remember. My aunt Diana came with my cousin Jacque and her best friend, Emma. As always though, I don't remember what we talked about but now I remember them there. My sister also came with our roommate Lana at one point and we ended up watching 27 dresses. Pretty sure I probably fell asleep during it, but I enjoyed the company nonetheless. This also I think was the only time I used the TV. So, yes, there were several other people that came.

During my stay, there were a bunch of different things that I had to do. They gave me this lovely little contraption that I had to breathe into to gauge my lung capacity.



I also had to get up a few times to walk down the hall to get some movement and exercise. They had a walker that I had to use. It was a little difficult because the arm rests were super high. Three weeks later and I'm still having a bit of trouble lifting my left arm. A couple of times during my stay I had to receive X-Rays. They'd put me in a wheelchair and take me down the elevator to like the second floor I believe. This was hard and kind of painful. They had me life my arms and hold onto these handles but they were like way above my head. It was difficult but we were able to do it. The first few times they wanted me to go on walks, I couldn't because my chest tube had to be connected to the wall, so I just hung my feet over the bed and then stood by the bed.

So, something I know a LOT of you have been waiting for is details of how the surgery went. Well, according to the doctor, it took 5 1/2 hours and was one of the most difficult surgeries he's ever done. He's been doing this for 10 years. One thing that I did not know until Monday or Tuesday about my surgery is that they had to go through my ribs to get out all of the tumor. Now, I guess (although I didn't hear this beforehand) that it's pretty typical with this type of surgery to break a rib. With me, they didn't just break a rib, they actually went to the middle of my middle rib and took out about a two inch piece. So, that's the reason for a lot of my pain and swelling. My incision however is HUGE. I'm seriously not kidding. It starts at my bellybutton, goes up under my breast and around the back just shy of the edge of my shoulder blade. All in all, there were 44 staples put in to seal the seam.




Let me talk about this photo for a second. Yes, I'm sorta groping myself. Oh well. Get over it. haha Also, that huge band-aid patch you see is where my chest tube went in. It was there to help drain. Although the entire time, the nurses were saying that it was really nice because not much was coming out. Enough was coming out that they weren't concerned, but the stuff and amount that was coming out made them pleased. My incision starts just about where you see it at my belly button but goes back quite a bit than you can actually see in this picture. I'm already showing WAY more of my body than I ever have and normally would, so don't complain with what you're getting. :)

**WARNING** **STOP** **WARNING**

Let me forewarn you. I have a pretty graphic image coming up. A nurse, doctor, something, not sure what she is, told me the first day that she had a picture of my tumor for me. I had wanted to see the tumor and everything once it was taken out, and had reminded people several times, but I guess someone forgot. Either that, or it was decided that couldn't happen. She came in on Monday to show me the picture. I was shocked. I usually really hate looking at graphic medical stuff, but for some reason since it was me I wasn't grossed out. I know some people don't like looking at that type of stuff, and others absolutely love it! So, I figured I'd give some fair warning. Yes, the entire thing you are about to see is tumor, kidney and lymph node. It's all Vlad. There's also something a little extra there. Can you see it?



So? What do you think? The little extra thing is THERE IS A FACE!!! Do you see it? Vlad totally has a face. Craziness.

Well, for now I can't think of much else. Perhaps I'll edit this post if I think of more things. Stay Tuned for my Part 3 which will include what the last few weeks have been like. Thanks everyone!!!

Surgery and Recovery Part 1

I will do an overview with as much information as possible, and then I'll go back and write about "feelings" and my thoughts on stuff. So, this post and I'm already assuming a part two, (since it will probably be quite long) will be details of the adventure. Make sense? Let us begin!

Monday February 28th
This day I was not allowed to eat. Boo. Instead, I was allowed only water, gatorade, jello, tea, things of that nature. Clear liquids. (Clear doesn't mean colorless, ps.) I was pretty hungry. I didn't really have much of a dinner Sunday night. I also had to drink magnesium citrate. This particularly bottle had a "lemony flavor". Ok, it tasted like poor quality lemon put into used cold bathwater. Yeah. Imagine drinking that. I'm sure there was even hair in it the way my hair is falling out these days.

Tuesday March 1st
More liquids and no food. I packed a bag with stuff to do and that I might need to have while spending a week in the hospital. I put in there my "Preach My Gospel" manual so I could study for my job this summer. I also added my laptop, and a bunch of nail files and clippers and stuff. One other part of this day...well, I'm sorry for the TMI, but I had to give myself an enema. Soooo incredibly awkward and unpleasant.

Wenesday March 2nd
Dressed in PJs, my dad and I drove down to the University of Washington Medical Center at FIVE A.M.!!! I had to be there at 6 to check in, so we left around 5. I hadn't woke up that early since work at EFY last summer. Check in was pretty easy. We waited not even 5 minutes before they called me back. (Same thing when I had my biopsy back in September). I went to the little prep room where they did just a few things, put in IVs, asked me questions, and told me more information about what was going to happen. They then gave me the epidural. I really wasn't sure what to expect with it. They had said some things that concerned me about the process beforehand, and some friends of mine that had one during pregnancy told me stuff as well. Well, it was nothing as I had expected. They had me lean forward onto a small able so they could get at my back. They rubbed that stuff on my back to numb the area and then they shoved the tube up by my spine. Apparently this could be really painful. I don't know, to me it just felt like someone was pushing on my back in a bad massage job. It's kind of weird because after this I was just sitting/laying on the bed in the prep room taking care of all that business, and then I have no memory. I have no recollection of them saying anything like "Ok, we're going to start the anesthesia" or anything. It's like all of the sudden, I was out. I don't even remember going down the hall to the room for surgery.

But, there I was anyway, unbeknownst to me, heading off to a room to get cut open and cut up. I think that was somewhere around 9 or 9:30am that I headed off to surgery.

Stay tuned for Part 2 where I will describe, as much as I was aware, my time spent in the hospital.

Leave a comment or email. SERIOUSLY you lurker reader you!

In the next couple of weeks the plan is to have several posts. I have a lot ideas floating in my head again. BUT I wanted feedback from my devoted readers. :) I asked a few times on facebook and received minimal feedback. As I have journeyed through this cancer experience I have had a lot things that are new happen to me. I know a bunch of people have questions and things they want to know about my "ordeal." SO here I am people. Ask away your questions and hopefully during the posts I have planned, they'll be answered. Just leave a comment or send me an email with what you want to know. Do it!! I know there are a ton of you just purusing and flying by, but take two seconds and ask me one simple little question. :) Thanks!

Surgery Information

On Monday, I found out the news. I met with Dr. Lin. Once again, I didn't learn too much from him. Overall, he said that while it helped my tumors have shrunk, it wasn't too significant. The one tumor around my aorta could potentially be a problem. He informed me that he did a surgery on Sunday that was similar to mine, except it was an 80 yr old man. So, if that one can turn out well.... He seemed positive about going ahead with surgery, although I could tell he is anxious about getting all cancer cells around the aorta. I'll admit, that has me anxious too.

My surgery is scheduled for March 2nd. He has another surgery that day, but I'm headlined first. I won't know the exact time of my surgery until the day before. If the other patient turns out to be diabetic, I'll be bumped to second, because of the fasting involved pre-surgery. As of this moment, I'm not entirely looking forward to the pre-surgery stuff. Next Friday I meet with my anesthesiologist, which is fine. That doesn't concern me. But the day before surgery I have to be on an all clear liquids diet, and get some stuff to...erm... clean out the pipes. That will be..fun. I think the worst part is starting at midnight before the surgery, I can't even have water. Complete fast. Hence, if the other patient is diabetic, they'll have to go first. I also have to use this special body wash they gave me. I have to do it the night before and morning of. Kinda weird, but ok. Anything to lessen the chance of bacteria!

So really, medically, that's all for now. I might have a few more things to add after next Friday.

Before the main event....

So I don't have much to update you on as far as my cancer story goes, but I do have something.

I went to the doctor yesterday to hear the results of my tests from Tuesday. To be honest, what he told me was a little underwhelming compared to all the anxiety and build up I had prior to getting the tests. He told me that my tumors had between 5 and 10% more shrinkage. That's not much, but it's at least an improvement. There was just a tiny bit of cell death to go along with it, but nothing remarkable really in any way. That's it. That's like all he told me. My dad was asking a ton of questions to reassure himself of everything, but we already knew all the answers. He'd asked them all before. My mom was actually there too and she just sat quietly, never even said a word. It was a little weird, but my dad was talking so much I'm surprised Dr. Tykodi even got his answers in.

So, here's the game plan. On Monday I go to the University of Washington Prostate Center (Yes, you read that correctly. They lump Kidney stuff in that department, which makes it awkward for young females such as myself.... especially walking in with my 55 yr old father, who I'm sure everyone would assume was the reason for our presence.) and I meet with Dr. Lin, who I've met once before. He is my surgeon. He's going to go over my scans and discuss his opinion about the surgery. There are so many ways this could all go and so many questions that I have.

For the most part though, it is sounding likely that in the next 2-3 weeks I'll be going in for surgery. Even though the idea of surgery is kinda making me freak out, I hope it is sooner rather than later. I am so ready to get this cancer out of me and move on with my life. Yes, I understand that I'll have to basically watch over my shoulder the rest of my life in case the cancer comes back, but this initial cancer, I want gone. I want to get a job and be independent again.

One cool thing though is that it is for certain I am no longer getting infusions of Avastin. It needs to be out of my system for when I have surgery because it makes it harder for the healing process to work. Also, after surgery, it is going to have no effect on my recovery, it'll be useless. I have a few more doses of Interferon to take, but I'm just about done taking that too. Again, I'll find out more from Dr. Lin on Monday.


On another note, I'm excited because the depression that cancer, and the drugs for cancer, brings has decided to hit the road. Perhaps not for good, but it feels different this time. When you discover you have cancer, your emotions are out of control. They can go in any direction. I have felt and have heard of a complicated array of emotions people go through. Everything takes a toll. Personal worth, spirituality, personal relationships, hygiene, dreams and aspirations. It completely affects every aspect of ones life. It is weird because I am the type of person who emotionally and intellectually has everything under control all the time. I'm a very sensible and practical person.

For a while right after I was diagnosed, I didn't feel much of a difference. I wasn't sure how I was supposed to be feeling having found out I had cancer. I was practical like always and had thoughts such as "Well, the doctors know what they are doing, it seems manageable, after just a bit of time, I'll be alright, no need to worry." This is kind of my approach to life in general. I don't get stressed or freak out about anything. Nothing I can't handle. Perhaps it's my faith in God, knowing that He is in control and since He loves me, no matter what happens, I'll be alright. Some days if I was feeling well enough, I had forgotten I had cancer. That is until someone else brought it up.

After a few months or so, especially after I started treatment, depression hit pretty hard. All those things I mentioned earlier felt like they came at once and they have stuck around. I won't go into the grisly details, but I've made things seem peppy on here. Even my sister who I share a room with probably wasn't aware really how bad it all was. Now, I won't say it's completely behind me, I've always struggled with it, but today feels like a new start. I don't know if it had to do with the sun shining so brightly today or what, but it is so welcome and I love it.

I'm excited to be motivated to do stuff and that I feel better about myself. I'm also excited that soon I'll be physically feeling well enough to do a LOT more stuff. Just a few weeks until the surgery, and then a month or so after that and I'll be as good as new!!

I'll definitely post again after I find things out Monday morning. Stay tuned!