Tuesday, March 26, 2013
It’s time to be real and talk about some things that aren’t always happy.
I went in for surgery on Tuesday, March 12th. I had been looking forward to this surgery. I had placed all my faith of being “fixed”. The surgery was for debulking (removing as much of my tumor as possible) and then doing chemo in my belly. In the pre-op my doctor mentioned he would only be able to operate if he could remove 95 – 96% of the cancer because only a small amount could be handled by the chemo itself. He also mentioned that only about 4 -5% of the surgeries he does aren’t able to actually be done because there is too much tumor to be removed. I heard the words but I thought “That will never be me. This is going to ‘fix’ me.”
The morning of March 12th Todd and I arrived at Emory at 5:30. I was taken back to surgery almost immediately. This was it! It was going to be hard, but it was going to take the cancer away. I got my IV’s, relaxed, hugged Todd, and was wheeled off to surgery.
The next thing I remember is waking up in the recovery area. I looked up at the clock and noticed that it was about 1:30. It was early. This surgery was supposed to be 5 – 13 hours. I thought “Oh, that’s great! Maybe there wasn’t that much wrong with me!” I did my usual and begged for ice chips.
It wasn’t long until I was wheeled off to my room. Once in my room I saw Todd and asked the all important question “How did the surgery go?” Todd looked me straight in the eye and said “Shea, they weren’t able to do the surgery.” Hunh???! Todd explained that I had too much tumor in my body to be removed and still function.
It hit me like walking into a brick wall. What do you mean? This wasn’t supposed to happen to ME? First, I shouldn’t have cancer but I do. Next, I get cancer again and I’m angry but I make my peace with it. Then, I finish chemo and get ready to do this huge surgery that will remove the cancer from my body. All my hope, all my future is wrapped up in this surgery. This surgery was something big. It wasn’t going to be an easy thing. I had signed myself up for something very hard, but even that was denied me for something harder. Having my body consumed with cancer.
After speaking with my surgeon I learned that I have cancer all in my intestines. A person can live without a colon, but we can’t live without any intestines. Unfortunately there is no clear spot on my intestines that could be used. It is all around the outside and inside.
I have a large incision from below my breast bone to my pubic bone – it is glorious! The doctor took biopsies of my tumors which have been sent off to a lab to determine if there is any type of chemo that my cancer responds to. I have an A-typical type of cancer that doesn’t show up on CT Scans, doesn’t show up on tumor marker testing, and can only really be seen through surgery. Chemo will never truly destroy my cancer. Chemo can only put off my cancer.
So now I wait. I wait to learn if there is something that can actually get the best of my cancer.
If you’re wondering how I’m doing – how would you feel if your hope had been ripped from you? I’m devastated, but I’m making it. I don’t know what my future holds or even how long my future will be, but I do know that I don’t want to be sad or mad with the time I have. I try to focus on being happy and enjoying myself. It does happen. I am able to be happy, though I do have a lot more down moments right now. I’m mad at God. I really am. I don’t doubt that He is God and that He loves me, but I do question His plan for my life. Surrender is still not an option – never will be – and there is always room for a miracle. I’m gonna kill cancer with positivity and not let it control me. Love all of you!
Thursday, February 28, 2013
Preparation H is not just for hemorrhoids and those bags under your eyes anymore!
If you remember my new chemo antibody causes either a facial rash or acne. Well, I am the happy recipient of a lovely facial rash. I’m actually not complaining because I would take a rash any day over acne! I take an oral antibiotic and then have a topical antibiotic that I take each day to cut down on my skin reaction.
The first time the rash showed up I wasn’t prepared for what all it would entail. I’ve always understood that rashes tend to go hand in hand with itching. But….I did not have any clue that a rash on my face could itch so bad!
My rash usually shows up about 5 days after I get my infusion regardless of the use of my antibiotics. The rash isn’t horrible. I just get little red dots that pop up in one day and are gone the next. Though the rash isn’t bad the itching is insane! I still remember the first time my rash showed up. I was checking it out in the mirror thinking “Not too bad. I can deal with this.” As the day wore on I noticed I would randomly scratch my face. It was just a little scratch here and another scratch there. By the end of the day I promise you I could have sat in front of a mirror and scratched my face for hours! It itched SO bad!!!
I searched through my drawer of medicine but couldn’t find any hydrocortisone cream – I thought I had some, but it must have been hiding. I decided to try a face mask to calm my skin down. It worked and I was able to sleep through the night.
The following morning I woke up and immediately started scratching. Something had to be done before I scratched my face off my head! I can take pain, I can handle surgery and other weird things, but simple little things like a rash that itches will make me go insane. I stared at my red scratched up face and frantic eyes in the mirror and gave myself a pep talk – “Get it together girl! Think! What do I have in the house that will help with this crazy itching?” All of a sudden it hit me! Preparation H! I had some Preparation H that had hydrocortisone in it – score!
I quickly shuffled through my medicine drawer once again and pulled out the glorious tube of Preparation H! I swear I heard a chorus of angels making that “waaahhhh…..” sound as I lifted the tube out of the drawer. I took a look in the mirror at myself and thought, “Are you really going to do this?! Are you really about to slather Preparation H all over your face?!” I stared right back into my own eyes in the mirror as I fought off another itching fit and said “Hell yes!”
I didn’t just put Preparation H on the rash areas, I smeared that stuff all over my face. Now, I’m not sure if you’ve ever used Preparation H before you know it has a distinct smell. Great…..I smelled like butt cream, just what every woman wants. I quickly covered the butt cream smell with my usual moisturizer. As my itching subsided and I started to put on my makeup I started thinking – Women sometimes use hemorrhoid cream for bags under their eyes. If that works then what will having that type of cream all over my face do? Would it make me look 10 years younger…?
I did my makeup, threw on a cute dress and headed off to chemo with a funny story to share with all my nurses and doctors. Everyone thought my story was hilarious (even my doctor cracked a smile – though he also explained how Preparation H would work well in an itchy situation). The funniest part of the day happened towards the end of my infusion. I was just sitting around fighting sleep and another lady who was getting some iron leaned over and asked what I used on my face because my skin looked “radiant”! Hahaha!!! All I could do was laugh - the Preparation H did make me look 10 years younger and give me a youthful glow!
I now have some actual hydrocortisone cream that I use, but I do look at the tube of Preparation H with new respect now.
Saturday, February 9, 2013
|Me and Ellis! 2 baldies!|
That’s right! The hair is history!
I fought it all through my first round of treatment, but as soon as I received my PET/CT results I knew the hair had to go. Since I would be doing more chemotherapy I knew that my hair would continue to fall out and there wasn’t much left.
I had been waging war against my hair since October. I would look around the house and see a Shea hair tumble weed roll by. (insert Western sound clip – WOWM WOWM Wowmmmm….) If you have a cat you know how their hair will form little hair balls and roll around your floor looking for the hardest corner to clean to wedge itself, well that is what my Shea hair tumble weeds did! Not only did they invade ever corner of my house and shower crevice but they also launched a full out attack on me during the night. I would wake up in the middle of the night with hair on my face, crawling into my eye, or stuck to my lip! Ellis would wake up in his crib with Shea hair in his hand. Todd would slip on it in the bathroom. Hair was everywhere!
I was losing the hair war. In order to win, I had to take charge and fast! I did what any sensible girl would do – I bought a wig and scheduled and an appointment with my hair stylist. Hair was NOT going to take over my house and my life anymore.
I had gotten to the point where I didn’t feel cute. I wore hats and tried to coordinate my outfits but at the end of the night I would take off my hat or my scarf and see the stringy mess that my hair had become. Todd would joke around and call me Smegal while whispering “my precious…..” as he got into bed each night. Hair was once something that added to my style but it had become something that made me feel down. When Carie shaved my head I felt a huge weight lifted. Simply by being free of those last stringy strands helped to boost my confidence. Those strands weren’t going to attack me in the middle of the night or terrorize my family anymore because I got to them first!
|Front of my hair pre-shaving. (Eeew!)|
|Back of my hair pre-shaving (GROSS!)|
|After shaving my head!|
Being bald is awesome! I’m not just saying that because I have no other option. It really is very liberating. I always thought that guys shaved their heads in the summer as a cop out. Just another way to simplify their daily routine and be a little cooler in the heat. NO! I gotta give it to the guys. They knew something that us girls never even imagined. Being bald feels great! I don’t have anything hanging down bugging me. I don’t get mad at my hair and have to pull it into a ponytail. It doesn’t look different from one day to the next. And, it doesn’t take forever to dry. Being bald is the universe’s secret to perfect hair and guys (GUYS!) had it the whole time!
|One of my wigs!|
|Me at chemo bald! SO comfy!|
So, now I wear my wigs when I go out (mostly because it’s cool outside) and hang out bald at home. There are times when I go out in public bald but I’ll probably save most of that for when it is warmer. I find that makeup is so much more fun when you’re bald because it stands out so much more. I enjoy adding hair accessories to my wigs and glue on my eyelashes. I need some like Nicki Minaj! I’ve always had an addiction to eyelashes so picking them out in a store is SO SO SO much fun!
You know, reading what I’ve written and thinking about the fact that I wear a wig and glue on fake eyelashes makes me realize that I have similar accessories to a stripper….. hunh. Well, I think in this situation it is good to remind myself that yes, I do wear a wig and yes, I do put on a lot of makeup and glue on fake eyelashes but all the things I’m doing are putting things ON which is the most important difference between me and looking like a stripper. Whew! Glad we talked that through.
|My fake lashes!|
Being bald rocks!
Monday, February 4, 2013
Hey hey! Time flies when you don’t always feel fabulous. I’m now doing chemo every week which makes blogging time very short.
My tumor is KRAS wild type – I know! WILD TYPE! Of course I’m “wild type”. I wouldn’t settle for anything short of spectacular. Basically they type your tumors in order to know what type of chemo you can take (there’s a lot more that goes into that but that’s all doctor stuff). Since I’m KRAS wild type I have multiple options when it comes to chemo drugs. When I first started my treatment I chose between 2 types of antibodies – either Avastin or Erbitux.
Avastin is an antibody that attacks tumor cells and prevents them from forming new blood vessels. Erbitux finds a certain growth protein that allows cells to grow. Once Erbitux finds these cells it interfers with its ability to stimulate growth (such as growth of additional tumor cells). If you’d like to learn a little bit more about these drugs check out this link http://www.webmd.com/colorectal-cancer/guide/new-drugs-avastin-erbitux.
As I mentioned before, when I started my treatment I had the option to choose between Avastin and Erbitux. I was told that one would give you skin rashes or acne and another would not. Well, thank you doctor for NOT making that a hard decision for me! I am a vain person and I will take the one that will not make me look like an awkward 15 year old, thank you very much! Avastin it was. However, now that I’ve done my treatment and had my scan and basically things are still the same…..yeah…………(sigh). Since I’m KRAS wild type and get the option to use either I now get to try the Erbitux.
Can I just say that I am NOT NOT NOT looking forward to taking this new drug. I’ve lost my hair – ok. I’ve lost my eyelashes and my eyebrows are hanging on by a thread – ok. But my complexion! Come on!!! (Sigh)
I’m pretty sure that God is out to get me. I feel like I’ve been taught patience and letting go of my control through this whole process. Now He’s teaching me about vanity. I’m a girl. I’m supposed to be vain. To be honest there are days where I feel like this is all too much. I can handle the cancer. I can handle the chemo, getting sick, and possible long surgery but a rash or acne all over my face? For some reason that is the one thing that I really have a problem coming to terms with. (Like I said vanity)
My oncologist started me on this gel I put on my face twice a day and an antibiotic (I’m not sure how that works) but both are supposed to help me manage the breakouts which are the side effects of the Erbitux. I start this new drug tomorrow. I’m not excited about it but I do hope it works. I’ve read that some people believe the breakouts mean that the drug is doing its job. It’s all about perspective.
Thursday, January 24, 2013
Hey Hey! Well….things don’t always go the way we plan.
I went to see my oncologist on Monday to get my results from my PET/CT scan. I think in my mind I prepared for either result – cancer had decreased and I was clear to have surgery to have it all removed or continuing chemotherapy. I really wanted him to tell me, “Its much smaller and you can have surgery to remove it all now.” Though, in the back of my mind I was prepared to hear the opposite.
Monday morning I dressed up (because if you get bad news the last thing you want to be is frumpy!), dropped Ellis off at my friend Sara’s house to play with some other little people, and headed to Georgia Cancer. Todd met me and we waited to meet with the doctor. Anticipation is the worst part – even worse than the actual news!
My oncologist came into the room and told us the news. My cancer isn’t worse but it’s not better. The tumors are still in the same place and are still relatively the same size. At that moment all I honestly thought was “hunh….” I really didn’t think anything. I didn’t burst out crying or get angry. I didn’t start to freak out or talk uncontrollably. It was surreal.
So, then we talked about what my new path is. The oncologist said that I had 2 options and they aren’t exclusive – surgery and chemotherapy. He recommended that I see my GYN oncologist and a surgical oncologist to talk about surgery for debulking. Debulking would mean that they would go in and remove what tumors they can. They may not be able to remove all the tumor but they would remove what is able to come out at the time. Then, I would continue with chemo because I would still have some tumor left. I will do some more chemo before the surgery because I don’t need to stop for too long and we don’t know how quickly I will be able to have surgery. The timing on my surgery will depend on if I chose to use my GYN oncologist or a surgical oncologist.
To be honest the news isn’t bothering me as much as you would think. I think it is because in the back of my mind I thought that this might be the case though I hoped and prayed it would be different. I also think that it’s good that it hasn’t gotten worse. I tend to deal with things better if I have a clear path. And, I have a clear path. I’m meeting with surgeons next week and I’m starting back to chemo. I’m actively doing something to fight this.
I start back to chemo this coming Monday. I’ll be doing a different mixture of chemo drugs to see if my cancer responds better. Basically I’ll do chemo, have surgery sometime to debulk my tumors, and then probably finish chemo and have another scan. It’s pretty much the same circle as before.
Now I don’t want all of you to be sad and feel sorry for me. I’m more than capable of feeling sorry for myself from time to time. I feel great right now. I’m optimistic of my path and am going to just keep on pushing!
Thursday, January 17, 2013
Not going to lie, I cried a few times this past week. You might think “Why on earth were you crying? Chemo is over!” True, I have a lot to be hopeful about; but, I think that is it – hopeful. I don’t want to be hopeful, I want to be certain. But….it’s more than that too.
Last week I had my last chemo treatment. Apparently the drugs knew that this might be the last time they would get a hold of me so they stepped up their game and kicked my butt! If that is truly the last time I have chemo then I don’t mind, but if I have to keep having chemo I am scared of what further treatment might do to my stamina.
I don’t know about you, but if I’m going to have a tough time and potentially cry it happens at night. I go to bed early because I simply don’t have the strength to stay awake, take care of Ellis, or talk to even my family. That, in itself is hard. Fortunately I don’t feel too bad about Ellis because Todd takes great care of him and both of our families and friends help out a lot. So there I am lying in bed, feeling tired and slightly sick and I start to think. Thinking is what gets me in trouble. I think about how I feel and wonder what it might be like if I have to keep having chemo. Then I think about the other alternative – surgery. It’s a catch 22 – chemo or surgery. Yes, surgery is the happier alternative because it means that the chemo has worked, but think about it for a minute. Surgery isn’t fun either. The effects of surgery do wear off and the cancer would be out of my body, but it also takes a lot out of a person. That is the point that wares me down. I don’t want to have chemo but I don’t want to have surgery (possibly multiple) either! All of it scares me. At the end of the day, at my lowest point, I’m a scared little girl.
Why can’t things be easy? That is the question I ask myself and yell to God from time to time. I’m tired. I’m tired of being tired. I’m tired of having a hard road ahead of me. I’m tired of having to be strong because it’s always there in the back of my mind – what if it returns again? It did already. What if this is just my life now?
That honestly is where I go. That is my low point, and I don’t feel bad about it. To be honest I think I deserve to wallow in self pity just a little. We all do from time to time.
I think about Todd, about Ellis, about my friends and family and that gives me some strength to keep going. But, do you know what really pulls me out of my funk? Anger. Anger that I would let the cancer win, take over my life, and crush my joy. Nope. Not gonna happen. That is when I say to myself “surrender is not a option”. Cancer may come after me; let’s just put it out there, cancer may defeat me but one thing I will never do is surrender.
That is one thing that cancer has given me – an overwhelming desire to fight. I think cancer does that for a lot of people. It shows us how strong we are, how strong we can be.
So now I wait. I have to wait to learn if I can have surgery or if I need more chemo. Waiting sucks, but if I have to wait that’s what I’ll do.
Thanks for listening.
Saturday, January 5, 2013
What does cancer really look like….? I mean, think about it. What do you think of when you think of a person who has cancer? Visible hair loss, sallow complexion, oxygen tanks, completely drained demeanor….? I think that society as a whole thinks of cancer patients that we see depicted on television. But do real people ever look like that?
I’ve had many people tell me that I don’t look like I have cancer. On one side I’m glad. I don’t want to look like I have a tumor inside me. On the other hand I’m disappointed. Now, don’t get me wrong, I’m not disappointed that I don’t look sick. I’m disappointed because cancer is something very real to me. It is something that I live with and deal with every day at this point. To be told that I don’t look like I have cancer sometimes makes me feel like what I’m going through doesn’t seem that serious to others. Don’t get me wrong. I don’t want someone to walk up to me and say “Girl, you look like crap. You must have a huge tumor!” I know people mean well, I’m just sharing how my mind twists things from time to time. Don’t we all have certain things that we interpret differently than what is meant by the speaker? Last time I checked we are all human, so the answer is an emphatic “Yes”.
I am always amazed when I go to chemo. I’m amazed at the sheer amount of people at the cancer center. There are always more than I would expect. I am constantly amazed at how many people experience ca ncer at one point in their lives.
I am a people watcher, so I like to check out the people I’m sharing this experience with. I would say there is an even 50/50 split of people who have hair and people who don’t. Some are guys and some are women. Not all chemo patients lose their hair. Most people at chemo look good. They are dressed nice and I can’t distinguish which person has cancer and which person is their friend there for moral support. Some people walk normally when they are called while others meander slowly to the nurses. Some people do have oxygen, but most don’t. I find that most chemo patients are older, but there are some younger ones too (I consider myself one of the younger ones!). Even being a cancer patient myself I can’t look at a person and know if they have cancer or what type they have.
That is the main reason that I enjoy chemo from time to time – the people and their stories. I enjoy getting to know others who are going through chemo with me. I feel like they are my comrades in arms. We are all fighting the same fight regardless of what type of cancer or what treatment we are receiving.
The funny thing about receiving chemo is that it is perfectly normal to say “What type of cancer do you have?” Normally that would probably be offensive to be so direct, but we all know that we are there for chemo or sometimes there are people there for blood disorders. I tend to be quite chatty at chemo (at least until the drugs hit me) – shocking, I know. The last time I was at chemo there was a cute younger girl sitting next to me. She was there with her mother who was receiving treatment. I complimented her boots and she directly asked me “the question” – “What type of cancer do you have?” I kind of smiled and told her I had colon cancer. I don’t mind being asked that question because they acknowledge the fact that I do have cancer and am going through something I can’t control. I’ve made a lot of friends going through chemo. I don’t know their names but we always chat and check in to see how each one of us is doing. It’s nice to talk to someone who is sharing a similar experience, even if it’s just their friend there for moral support, because they understand how what we are going through is hard but it doesn’t change the fact that we are all still people doing life together.
I hope that as you read this you aren’t offended. I do like to know that others think I still look “normal”, but sometimes I need people to see that cancer isn’t always so black and white. People by nature hide a lot of things. We don’t want to seem out of the norm even if we never feel normal on the inside. And, this applies to any type of sickness, not just cancer. Consider the fact that more people than even I realize have cancer and not everyone who has cancer fits into the Hollywood stereotype of what a cancer patient looks like. We all have problems regardless if we show them to others or not.