I try to not blog on my phone. I know what I produce isn’t as good. But itsehat I can manage right now. So an update. A little over a month ago I was sent to the ER for lightning headaches. I was struggling to walk straight. Well. Cancer was found in my brain so they rushed me to the hospital of U Penn for surgery to remove the two masses that were pressing on my spinal chord. The first surgery went fairly well. The second my heart stopped once I got moved into icu. They couldn’t incubate me Diego some swelling. Now I have a trach, which I hate, and a stomach tube. I’m not able to eat by normal means. I cough at any irrigation to the trach. I’m in rehab to hopefully get some strength back. This is just frustrating. I’d rather be out playing with Cadell. Instead I’m proud that I can stand or put clothes on. It’s such a mental change. So there’s my update. Things aren’t going that great for me but they could be worse.
My theme song going through this has been:
You’ll be okay by a Great Big World
(You’ll be okay You’ll be okay The sun will rise To better days
And change will come It’s on it’s way Just close your eyes And let it rain
‘Cause you’re never alone And I will always be there You just carry on You will understand
You’ll be okay You’ll be okay Just look inside You know the way
Let it go Fly away And say goodbye To yesterday
‘Cause you’re never alone And I will always be there You just carry on You will understand
And I will be strong When love is gone And I’ll carry on…
You’ll be okay You’ll be okay The sun will rise To better days)
And I am getting to better days. I am floating right now. I have found a horse to lease. He seems to have almost chosen me. He came up to me in the field yesterday. Apparently that isn’t something he usually does. It touched my heart so much. It was his choice to come and acknowledge me.
I have been missing having a horse to love on and now I have one (well almost, still haven’t signed the lease…)
He is curious and smart. He will take time for me to get to know and I love that. Plus he is very close to my house so I can pop over and see him so much easier! The owners are awesome too. So fun and happy and carefree! I just feel at home. I don’t want formalness. I want to enjoy a horse. I want to be around people that want the horses to be happy with everything like I do. My theory is a horse should have as much fun as I am. That is just how I am. I don’t want to be selfish and be the only one enjoying the relationship. I want it to go both ways. You don’t see that in all barns. And Cadell’s owners are the same way. You can see it. They are having fun and enjoying life too! That makes me happy.
I struggle being around people not enjoying life. I look at it and go “Life is short, have fun! Look at what I have on my plate and I want to have as much fun as possible. You should too!” Smile and laugh. Enjoy each moment.
Here is to my new relationship with Cadell and his owners!! WOOOHOO happy dance me!!
I rode a horse yesterday and found out just how much muscle I have lost due to the months of anemia. I couldn’t get my butt up in the saddle even with a step up. How embarrassing. I have never been graceful getting on a horse but I can do it. Dnag. I guess I need to work on my quad and glute muscles. I had to stand on a barrel to get my leg over the horse. I felt like such a horse noob!!!
And oh my word!!! My legs are sore today!!! The handsome horse I was riding is part Percheron and he definitely showed his draft side. Definitely!!! Lots of sore muscles today for me but I am happy with that, it means that I have muscles there starting to remember they can do things.
So now I have a new goal…. Get my legs back so I can ride. I have an area I can concentrate on and work hard at. Somehow when my goals are around riding horses, they get done. A horse is my motivation and it works.
I am excited about this. 🙂
So here is the ugly truth of what happens for me on chemo. Everyone is different. Everyone has their own struggles. Here are mine.
My nails are chipping. I used to have long and strong nails. Never had the need for fake nails here. But now I am considering them because of how brittle my nails are. They flake they break at the littlest thing.
Heartburn. I am on two meds to deal with heartburn. At one point the heartburn was so bad I threw up from it. I have lucked out that it is the only circumstance where I have thrown up from chemo (I am very lucky on that from)
I don’t recognize myself in a mirror any more. Honestly I am horrified when I look in a mirror. I feel like I look so much older.
I used to have nice long wavy hair that people crave. I had Farrah Faucet’s hair. But now all of that is gone. With colon cancer chemo, you don’t lose it all but I lost enough that it looks terrible. And the hair I have is brittle and fried looking. It has lost all curl or shape to it. I have tried so many things to make my hair look better. Wigs are itchy, cut it short and I hate it now. Wearing caps (this has been the most successful), extensions. I hate my hair. I HATE looking in the mirror
My facial skin color is now different and it is blotchier then it was before. Makeup is required for me to look human. I have to draw on my eyebrows every day and eye liner because those hairs are gone too.
Energy. It comes and goes on the most random of times. For the past three weeks I had been feeling great. I was bouncing everywhere annoying everyone with my joy. Today I am dosing myself with caffeine so I can work. I needed it to keep going. I am hoping my fatigue isn’t coming back because I will throw a fit. My body has grown because of 2-3 months of rough anemia having me sleeping 12+ hours every day and it never being enough.
Concentration is harder than it has ever been. I get distracted – Squirrel- at any given time. It makes working even harder. I can’t remember things. I Have lists everywhere to hold me accountable. But there are days my brain just doesn’t want to work so I have to fight for every accomplishment.
Then there is the morale situation. The odds are not good for me to survive this, yes I am still fighting but I have to be real that I am fighting for every day. There is not getting better right now. My mass hurt me time to time because it is putting pressure on areas if I exercise and that hurts. There is the struggle about worrying about the future. There are things I have to do to prepare for if something happens (will, advanced directive, letter to kiddo, etc).
Cancer touches everywhere in your life. It doesn’t leave one thing untouched.
Earlier this week I did Yoga. The little alien (what I have taken to calling my adrenaline mass) was angry about being scrunched up in some of those moves. There was a part of me that was happy to annoy him with such things! Kinda like how I poke at him saying “die, die”. You are not wanted. Get out.
This morning I had some blood show up in my stool. Talk about miniature freak out. I called the dr and everything. This was the only symptom I had when I was first diagnosed 4 years ago! Of course I am going to freak out. “No No NO… you can’t be getting worse.” Plus Mr. Alien is still mad at me and hurting a bit. Fears of things getting worse inside my body. It is like I am waiting for things to start growing again. I am waiting to hear bad news. The nurse on the other line kindly informed me it was probably just from how my bowls like to swing to different states. If it gets worse, call back… Okay. Still doesn’t put me to 100% at ease. Tomorrow is my vacation day from chemo. So I am hoping that things are staying the same except annoying Mr. Alien, and that I am okay with.
Still there is a part of me worried about what I can’t see. What is going on inside my body where I don’t have information until I get my scan in a week or so (guess I need to schedule that…. ). Just hope and pray that I am still holding still. Please let me be holding still. Please let my body be winning the fight against the alien. Please. Tonight might just be a Xanax night….
I am at a crossroads. Things have changed again, but this time for the good. Heck this time for the great! I am feeling so good. Since I go the anemia shot and started acupuncture I am back to me. I feel like me. I think back to the me of the past 3 months and cringe. She was so unhappy, so hopeless.
Now with this beautiful weather the northeast is getting (heck it was 75F yesterday… in FEBRUARY!!) I am just itching to do stuff. I am itching to be in paddocks with horses. I am itching to get muddy. I want to move. At nights I am no long going to bed at 6:30 like I had for months. Heck I do not know what to do with myself after 6:30.
I just want to be on the move all the time. I am convinced that acupuncture is helping me. I was starting to drag yesterday and then had acupuncture. Now I am rip roaring ready to go. It could be because I am visiting Dill this afternoon.
I haven’t seen my boy (yeah he is my boy… still possessive of that huge boy) since I said good bye in December. I can’t wait to see his eye rolls and sighs at seeing me. I can’t wait to hug his neck (no matter how much he thinks that is a stupid thing to do) and smell his horsey smell. I am bouncing out of my chair right now to get to go and see him.
If you would have asked me 4 weeks if I could go to see him, I would have told you it would take too much energy. I hope this lasts. I hope I can keep feeling like me. This is me, bouncing around with joy and horrible jokes. I don’t want to go back to that hopeless version of me. I want to stay this obnoxiously joyful person that I am.
I don’t think about death any more. I don’t think about where my path might lead. I am in the present again. Oh it feels so good. Oh hope feels so great!
So I’m writing this on my phone, but I wanted to get the news out. Plus I’m on Xanax and I’m waaaayyyyyy too lazy to get my laptop out which is two feet away from me. (I’m listening to my therapist on the Xanax. Aren’t you proud of me?)
So today I asked about the pill Xeloda. The colon cancer online board had a lot of people talking about it. So I was curious why my dr chose a different regamine. The scientist in me came out. I know she had a great reason. I was just very curious. I was also curious why they chose to not do surgery on me. I also admitted that I wanted to start stretching out treatments as they recommended last week (therapist should be proud). So here’s what happened.
1. She likes 5-fu in FOLFIRI because she sees those patients every other week and helps her monitor those she’s concerned about. But she had no problem switching me over. With this drug I wouldn’t need to have the 5-fu pump that I HATE HATE HATE! By the way. I hate that pump being attached non stop for two days. It does the same thing. Has something called hand-foot side effect where the hands and feet can become very sensitive. But other than that it is very similar to the stuff I’m currently on.
2. Apparently it’s very risky to do surgery when there’s masses in different place. Where mine are, are apparently very rough surgery. So if they took out one mass I wouldn’t be treating the others. Makes sense to me.
3. They agree it would be best to help my sense of living. They commented again about how good I have been doing. Heck today is #16 treato for me! Every other week. No missing of weeks yet. They think it would be good to give me a breather so I have some extra time to enjoy life.
So here’s the plan. I have a CT scan in the next three weeks. I don’t do my treatment in two weeks. In four weeks we review my CT results and hopefully start on Xeloda and then only do treatments every three weeks. This gives me more time in between treatments which means I have more time to have fun. Plus I won’t have a hermit weekend bc of the pump every three weeks. And if this doesn’t work, we change back. Very very little risk and all the potential for gain. I’m so excited that this weekend might be my last time on this horrid pump!!!!
I was told I should write something about my recent experience into the foray of online dating. I have done it before. Some with good success, some with horrible. When I was first diagnosed I didn’t have any interest in dating. Who would want to attach their life to someone with what I was dealing with. It is an extra struggle to add into it. But in January I decided to give another try. I was starting to come to grips with what my future held.
So I started again on OkCupid. Figured, what the heck. Let’s see what happens. If nothing else I can meet some fun, interesting people. And sometimes that is a really good thing.
Well the usual onslaught of “interesting” people left messages that made their intent VERY clear. Hey, to each their own right? I don’t judge even if that wasn’t what I was hoping to get out of the experience.
I found this one guy that showed some potential. So we started messaging a lot. He is a fellow geek, foodie, not repulsed by the dirt a horse entails (ha funny pun!). We talked about lots of geek topics! Hey this is a good sign right? But over time, the questionability of him started to show. He didn’t do anything. Over the month and half I messaged with him, the most exciting thing he did was go to a market. He talked of all these things he wanted to do. But they were always tied to doing it with “that special person”. So life was on hold for him. When I recommended that he do something fun with his free time, that was when the hidden “him” came out. See the pictures below. *********
I was appalled. All I said was a kind suggestion to go out and have a good time. So I decided, I do not need this in my life. I am trying to enjoy every moment. I don’t need someone who is going to fly off the handle at such things. I really don’t.
He knew my health situation. Why would someone say “When you die, I hope you go to hell.” To someone that is going through what I am going through. It just showed a vindictive nature that I REALLY didn’t need in my life. I want someone who loves life. That likes to have fun. I want someone that brings as much exuberance as I have. Then he had the gall to ask for a truce. I told him there was no coming back from such a comment. I can see it being said during an argument in person, it is still terrible but I can see it as an in the heat of the moment. But this.. This just astounded me.
I hope he has some luck. It just won’t be with me.
Yesterday I got to enjoy a therapy session and then time with my Mom, Kiddo, Sis-in-laws and two nephews. It was so great. We walked probably two miles. But more important we just spent time with each other. We enjoyed each other. We laughed and created memories. And we have the pictures to improve it. It makes the heart glad that after an extensive outpouring of my heart to my therapist (who is amazing btw).
I have complained a lot recently and I talked with my therapist about it. She asked me why I am not taking xanax on days where I know my spirits will be down. I had no good answer besides “I never thought of that”. My drs had been encouraging me to stretch out my treatments. But I was afraid it might cause the cancer to start growing again or to move. She looked at me and said “Do you trust your doctors?” I said a resounding “yes”. She looked at me and said “do what your doctors suggest. They know what they are talking about”. I looked at her and went “that makes sense”.
I hadn’t thought of those things to make my life easier. This is why she is great. Plus I sobbed for most of the treatment just getting things out. I feel like I lost 10 lbs just getting that out of me. She reminded me that what I feel is completely normal for my situation. I needed to know that all those feelings are normal. And she is a professional telling me that.
But getting all that out let me really enjoy and embrace Longwood Gardens and my family. I have some amazing picutres that I can put in kiddos journal for if I pass. I have given her one memory she can go back to. And that makes me happy.
And in two weeks we are all going to get together to do messy art day. Throwing paint. Making a mess. And I am sure laughing a lot. Just enjoying life together.
There is something about writing. There is something about it that cleanses the soul.
I write my darker stuff, because honestly, when I am in a good mood, I am out living a fun life. I forget about telling people about the good.
So today when I blogged, I needed to off pour what was going on in my head and heart. The pain, the agony, the disappointment. Basically, the loss of hope for my future.
But know what happened? Shortly after posting that, I started feeling better. I started seeing the sunlight return. I knew there was hope. I was open to words of encouragement. My perspective changed.
That is what blogging does for me. It is a self-therapy session. It is a way to let the world know the truth of where I am, but it is their choice if they want to hear it. And that is okay. It is okay if they need a break from the gloom and doom I feel from time to time. I don’t feel less for them for it.
However, know that I feel the good stuff as well as the bad stuff. Know I see the sunlight too. And writing on here is my way to find that sunlight. On here is my way to purge my mind and soul of what I am dealing with. On here gives me an outlet where I do not need to determine who I have taxed too much. On here gives me a chance to speak out to the world and anyone that wants to listen.