The morning of my bilateral mastectomy, I remember trying to get my mind off of things before I got out of bed and I was flipping through my phone. Someone from work had texted me a picture of her son who was maybe an hour old. Logan was born the day of my surgery. Yesterday I saw a new picture of him on Facebook that she posted along with a comment about him now being 4 months old.
My surgery was 4 months ago yesterday? Really? It has been four months? That's even crazier than my last chemo treatment being in 10 days!
It's strange because so much has changed when nothing has really happened in four months.
I haven't worked. I am pretty much home unless I have an appointment. I haven't done anything for 4 months. But SO much has changed. I had short brown hair, short purple hair and now, no hair. I have gained so much weight, lost muscle and gone up 2 sizes in my jeans. Nothing fits now.
The relationships I have in my life have changed so much. Some didn't make it, others have become so much stronger. Old friends from my past, who I had lost touch with, have been incredible to me and I am so thankful for them all. I'm lucky to have rekindled these relationships. One big positive that cancer brought into my life.
I've also taken a lot of time to think about what matters to me and where I want to be in life. I've never been able to do a 5 year plan. Right now I can't even do a 6 month plan! I have my last chemo in 10 days, then at some point in June I start up almost 6 weeks of radiation. That's all I have on my future list.
But I have learned so much about myself since October 29th. Even without clear direction of where I want to end up, I know what is important to me. I am not afraid to go after where I want to be or to pursue my dreams. Things in my life will fall into place for me. I will end up where I should be, doing what I should be doing with the people in my life who should be around me. Things will work out as they are supposed to.
Right now I'm still struggling to get through the end of chemo. This weekend is the worst as far as the side effects I get on Taxol. The pain is very intense. Sometimes it hurts walk. I wince in pain when it shoots through me, always in my hands, feet, arms or legs. Basically anywhere from my elbow to my fingertips, knees to my toes are all fair game. SHOOTING pain. I took the older, lower dose of Vicodin earlier but it didn't do anything. That was 5-500. I have 7.5-500 as well. My doctor was all set to write me one more for 10-500, but I said I could just take 2 of whatever I have first. But the pain is overwhelming at times.
I'm still insanely exhausted. The fatigue is crazy. 12 hours a day? Really? After seeing the endocrinologist yesterday, my thyroid levels were normal again. I was off because of one of the three steroids that I'm on. Wonderful.
Otherwise, I still have the "chemo brain", where I can't remember or understand basically ANYTHING. Another frustrating part. Well, all three side effects are frustrating. Sleeping, feeling stupid and in pain. Love it.
I'm REALLY hoping that once chemo ends, so will all of the effects. I know that the pain should be done first, since that peaks... well this weekend it is peaking as far as the cycles of treatment. Then I don't know about the chemo brain and fatigue. Those can last a while I guess.
I can't remember if I ever gave a link or anything about chemo brain, but I read one the other day that gave some decent info from Dana Farber. http://blog.dana-farber.org/insight/2013/01/mental-fog-chemotherapy-side-effect-is-real-and-often-treatable/
It is an actual thing, not a so-called thing.
If you don't read the actual link for the Dana Farber blog, this is the part that is most important:
"Some scientists have adopted a more formal term – post-cancer cognitive impairment (PCCI) – to describe this group of symptoms, which include memory lapses; difficulty concentrating, planning ahead, organizing, and multitasking; and slow mental processing."
Yup, that about sums it up pretty clearly. Slow mental processing, memory lapses and difficulty concentrating... yup!
Before this, I used to read all the time. LOVED books. I'm home every day. Have I read a book since I've been on chemo? No. I can't. I can't focus long enough for it. Even reading a magazine is challenging for me. That's frustrating. Not understanding things is frustrating and knowing that I can't remember or understanding things is the most frustrating.
But, no matter how long it takes for the side effects to resolve, the end is in sight. Disappointing to know it can take possible 9 months for the symptoms to resolve, but it could take years? Crap! That would suck!
As scary as it is, I'm trying to think of the future and where I will be after treatment is done. It is so hard to imagine going back to work, sitting at my desk and living my old life, as if none of this happened. Hard to wrap my brain around. One step at a time, right?
And I'm doing my best to stay as positive as I can. Some days that is NOT easy at all. It is so easy to feel lost and alone and drifting in this whole thing. As much as people try, no one really gets it unless you have been there. And it sucks that so many have been here and do understand. When I talk with those women, I feel this connection that is hard to describe.
I'm working on letting go more and more and trusting that I'll end up where I need to be and that things in my life will all work out. I have always believed that and have said, I always land on my feet. This is no different. Whatever happens next, whatever road I am on, I know I will land on my feet and things will work out for the best. Might take me a while to see it, but it will all work out.
In the mean time, trying to figure out finances still. Got an email from work last week. FMLA requires them to hold my job for 12 weeks and while I'm out during FMLA, they are required to continue to pay their share of my benefit premiums. Well, 12 weeks is up.
They are not required to hold any job for me at this point. The legal-ease wording of the email was interesting, although part of it left a bitter taste in my mouth. "We need to make a decision whether to extend your leave or terminate your active employment - with the expectation that you will be rehired when you are able to return to work. Both options have significant - but differing - implications for the Company."
Basically, they don't want to pay for my health insurance anymore. They have paid my share for February, which I was planning on doing a payment thing when I started working again. But now I think they just don't want to pay for any of it going forward, and then do repayments on Feb-now when I return. So wonderful. Add in another $600+ a month to cover my benefits while I'm out of work and sleeping 12 hours a day, unable to focus on reading anything and unable to remember conversations that I had. Okay. Great.
But, like I said, I always land on my feet. Things will work out as they should and what will be, will be. I'm not going to try to fight with what is going to happen anymore. One thing I learned, when dealing with cancer, you have very little control of things! VERY little control. Things happen, then you react. That all you can do.
I'll return to work when I feel I can. When I'm not sleeping 12 hours a day. When my legs and arms are getting shooting stabbing pains. When I can remember a conversation I had the day before. When I have enough focus to write a blog post without stopping and going back to it 5 times over several hours, in between naps.
Right now, I'm not at that point. I don't know how long the effects will take to stop. I don't know how my body will react to radiation. I hear it can okay but I also hear that within 2-3 weeks the fatigue can be very intense. Everyone is different and each body responds differently.
So now I'm going along and seeing what's next. I'm laughing when I can and enjoying the small moments that come along the way. That is all I can do at this point.
Funny, I was already feeling like this, already talking about this yesterday, and today I saw a quote posted on Facebook that describes all of this perfectly for me. I forgot for a while, but now I'm remembering again and doing what I have to do to focus on remembering this.
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