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.
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.
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!
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.
I have spent a lot of the past few weeks coming to grips with where my life will lead. I made the mistake of looking up survivorship rates for metastatic colon cancer (11% 5-year survivorship). It was a hard hit. It was a tough sense of reality. I try to remind myself that a lot of the 89% that don’t survive are farther along in the disease than I am. A lot of them are WAYYYY older than me and have other health problems. A lot of them don’t have the strong desire to live. So all those things are in my favor plus my very favorable response to treatment. Most don’t see the results I have been having.
That being said, I have to be realistic about what my future will possibly hold. I need to be accepting of the fact that I may be killed by this disease way before my time. And honestly, coming to grips with it is tough but in the long run it is making things easier. I am not just brushing things off to the side. I am not being an ostrich with my head in the sand. I am facing it head on.
The hard part is that those around me don’t want to be realistic about what could happen. They don’t want to believe that in a few years I may not be around. And I can’t fault them for that (heck I would be upset if they were cheering at that option). But the truth is that I need people to be accepting of what may happen. I need those around me to be realistic about what my life might contain. I need that level of support.
When people that I love only want to see the potential miracle and don’t want to talk about the other options of how this will end, it makes it harder for me to be honest about what I am going through. It makes me that much less likely to say what is weighing on my heart or running through my brain. And there is a lot going on in there. Oh my is there a lot going on in there.
I am starting to work on a Will to protect my kid’s future. Plus, I need to identify where my pets will go so they can have a good life too. I need to have an advanced directive written up. Who is going to speak for me? Who is going to make sure that I only receive the medical treatments that I want? What are going to happen to all the family heirlooms I have been lovingly collecting my whole life? Where am I going to live if I can no longer work? How can I make sure my kid has the best life possible? How can I give her the most memories possible so that she will always have that with her?
I need to talk about these things. I do not have a spouse to share with. It is just me and kiddo. I cannot and will not discuss this with Kiddo yet. I am still fully functioning. She doesn’t need that weight. But I need those around me to be able and willing to speak with me on these things. I need to work them through. I know it is hard for them. It is easier on the heart to not process this. But when I am asked what I need, this is what I need. I need people willing to sit with me and talk with me through these massive decisions. Because the truth is, once I have these things decided, I will have a huge weight off my shoulders. I can live in a sense of peace knowing that it has been taken care of. I can rest easy knowing that if the worst were to happen, I have made it as easy as possible on my family. I have made it something clear and concise so they don’t need to worry about what I want. I will have it all spelled out.
But I need to bounce ideas. I need to process this. It is a lot and painful, but it is a reality with where my life is right now. And I want to make these decisions now. I want to put this “to bed” so I can go on having lots of fun. It gives me peace of mind.
I know I am asking for the hardest thing from those I love. I truly understand that. But this is what I need the most right now so I can move past this phase. I need to know I have given my loved ones all the tools needed to make difficult decisions easier.
I love you all. I really love you all. Thank you so much! I am not saying any of this with sadness. I am saying this with acceptance of reality and with peace of mind. Thank you again and again!
There is a point where no more emotions are available. I have never reached that before but now I think I am there. I don’t think I can cry or freak out any more. Over the past 7-8 months I have been through the following things:
- July 1 – find out at my quarterly cancer checkup, that cancer is back and it has moved to new locations. Over the next week I have a painful biopsy, scan and fear running through my head.
- About a week later I find out I have Stage IV colon cancer and that the dr only gives me a few months to a few years to live. A week later I get a chemo port installed and the following day start FOLFIRI chemo.
- End of July my ex-husband decides he wants to change our custody agreement in massive ways and starts a two-month long fight.
- End of August my grandmother, one of my greatest role models dies at 90. I saw her a week before she passed but because she had mersa I couldn’t even hug her to say goodbye. I couldn’t touch her.
- Next two months there is chaos in the family trying to figure out what to do with my 92-year-old grandfather and some of his stuff. Just utter chaos.
- October I get good news that my masses had shrunk some and their energy uptake was drastically reduced.
- December my energy drastically reduces to the point that I can no longer go to see Dill. He is just too far from me. He is my stress relief and now I need to give him up.
- End of December I say Good Bye to Dill. The time leading up was dreadful.
- January, money gets tight because my job is switching us to a new pay schedule so I have three weeks with no pay. I budgeted well however surprises happen.
- January I have a friend who lets me play with her buckskin horse. I have some stress relief back. Happy, Happy me!
- January I reduce my chemo drugs because. More happy dances!
- January I hit a deer. Nothing too bad but another thing to deal with and a deductible to pay
- January I start on new health insurance and have to fight for my first treatment. Ugh… changing insurance stinks!!!!!!
- Find out Dill has EPM. It is a mild case but still. Hearing he is sick, I just stare at walls knowing I can’t do anything for him.
- Find out my oil tank gauge isn’t as accurate as I hoped. I have to wait until it gets under ¼ tanks to get the minimum delivery from my oil delivery company. Well apparently it jumps from ¼ to empty suddenly as I had been watching it. So I come home to a cold house and have drain my bank account to pay cash for an emergency delivery. And I stare at my walls.
I don’t know how many crazy things I can go through. However, I have been riding a rollercoaster for a while. All the while dealing with having a potentially fatal cancer and all that implies.
The odd thing is I am doing well. I am not freaking out. I am not stressing out. I just shrug and go “okay let’s deal with this now” or “Oh cool, I got a present” (which I still get excited about). I try to swing everything to the good side. I try so hard because I have enough on the bad side.
When talking with Ch the other night, he recommended that I am emotionally drained. That I just can’t process any more on an emotional level. Logically I can, but emotionally I struggle. If it isn’t good, then no emotion surfaces. That bank of emotions is empty. That bank of emotions has nothing left. It has been drained of everything over the last 7 months. But the benefit that the cloud of depression has lifted. And it lifted when I left Dill at the end of December. That cloud doesn’t exist here anymore.
I suspect if I found somewhere safe, in arms that were safe, I would find out the tank isn’t empty. But do I really want to go through that? Do I really want to let it out? I am tired of crying and being stressed. I am tired of the two months of hell that November and December were. I don’t want to go back there. I am enjoying being in a good mood most of the time. But I wonder if that is why I am so painfully exhausted? I had to do everything in my power today to not fall asleep at my desk. I had more coffee than usual. I had more sugar than usual. But still I feel like I am in a zombie state. I just want to go home, take a hot bath, and go to bed. That is all I want to do. That or curl into some safe arms and fall asleep. But that option isn’t available unless you count Digit, my lovely dog. But she isn’t the same.
I really have been through a lot in the last 7 months. I have been through more than my fair share. I am fighting for my life plus dealing with all the other sporadic things that happened above. I think I have experienced enough for now. I would like to get to have an easy pass for a while. A pass where only good happens. And don’t get me wrong. January really has been a good month for blessings from God. I am surprised continually by His foresight and His level of protection. I am surprised by His level of providing. However, this body is tired. This soul is tired. This heart and mind are tired. They need some rest. They need a safe place where bad things don’t bother them.