A Path Through

Through all of this journey, my focus has been to have messaging that is positive but honest with a sprinkle of humor and learning, even when dealing with hiccups and challenges. This post will continue with that mentality, however with a bit more of a personal note as well (really how much more personal can I get).

With this path, I have not spoken in any great detail to the level of fear that follows me through on this journey. It is a daily struggle to fight against it, and how I manage the impacts is 100% dependent on how I feel both physically and emotionally. Honestly, there are tears, anger, and fear and I don’t want anyone to doubt that this is part of every cancer patients journey. I may write with a light approach, but this is the reality of what it is like to live with a cancer diagnosis. Cancer brings fear, no matter who you are, or the type of cancer you are battling.

It can be difficult to manage the fear at times and I tend to hold it in as I do not want to burden those around me with what is going on in my bald little head. When I do have a moment where I may break and share how I am feeling, I am finding that the quick reply is reassurance. Now, don’t get me wrong, I TOTALLY understand why someone who loves me would tell me not to worry, that I will beat this, that all will be fine. No one wants to talk about anything but a positive outcome because right now that is what we need to do. However, this does not stop the feeling. Additionally, I also know that those I may share my thoughts with most likely are dealing with their own emotions on the situation, they have their own fears and they are doing the same thing I do…keeping them in, not burdening me with their worries. So really….we are protecting each other….but also not recognizing how much we need to talk as well. Today, I am going to take the step to put things out there…honest sharing of my fears….(well cancer fears…don’t get me started on bridges and falling…and spiders…and well there are MANY more).

First up, and it is a big one…I am afraid of dying. Wow…didn’t pull any punches there did I? Funny thing is that this is a big statement and not one of my doctors have mentioned this at all….it is all me. I applaud their positivity and the fact that they are MUCH smarter than me…and in the back of my head I will still wonder if they are avoiding the tough discussion because well… it is easier to believe the negative some days.

Where does this fear come from? Well, I think we ascertained early in our blogging relationship that Google…destroys positivity. As much as I try to fight what I have read, when I am down, tired or uncertain, the negative creeps in….and makes me doubt the future, makes me fear the unknown. What I also find odd, dying was never something I feared…until I got cancer. I took life for granted, and that is something I will not have the luxury of doing again.

For me, some of this specific fear also comes from the approach that we are taking (and let me reiterate, the approach that I AGREED to). As shared, we are on a chemotherapy, surgery, radiation treatment plan as we want to kill the cancer before the surgery, and then assure we have killed any little cells that were missed in surgery. With this approach, the one answer I do not have is “what stage is the cancer”? As shared, until surgery and the related node biopsy the stage can not be assessed. This was initially not an issue for me, however the not knowing is feeding into the fear. The fact is, we are ASSUMING a lot. Now when I say this, it is not me and a whole bunch of doctors flipping a coin and heads indicates all is good. They have actually got their education from real medical programs (or so I was told when I whipped out the coin and suggest we flip!). With the CAT scans, bone scans, blood work, Ultra sounds, MUGAs, and so on and so on…we are assuming that there is no cancer anywhere other than my right breast. However, that assumption came in February, and my head keeps going to the fact that TNBC is an aggressive cancer. What if it had started to make moves just after the scans were done? Yeah…SEE how easy it is to go down the fear path…? Just wait, I will show you again…keep reading. I am also waiting for the outcome of my MRI to assess if my shaking is chemo related, or if well…..the fear keeps growing.

With not knowing the stage, my mind can quickly go to things like, reoccurrence, and life expectancy. Percentages run through my mind and when you read of cancer statistics they often speak of 5 year intervals. When you have children that are 11 and 14 and think of a five year life expectance, the emotional impact of having my kids be without a mom at 17 and 19 crushes me . Thinking of my husband being a widower before we even have a chance to do all that living we have been planning. Thinking I can’t plan a life because I don’t know if I will have one (yup…we are WAY down the fear path with the above).

Outside of dying, there is my fear about how much more my body can handle with chemo as the impacts grow with each session. Currently, I am managing seizures that now can be up to two per day. Additionally, the expected neurological impacts of the medications have started to occur. I live with a regular yet subtle shake that impacts my body most times of the day. This has impacted my hand writing, and to anyone who gets a text from me…even spell check is looking at some of what I write and thinking WHAT THE HECK!?. I have also lost the feeling in all my toes making me walk like a like a drunk zombie who tips over the tiniest of a breeze. This can be highly entertaining to watch for some, however for me it is a constant reminder of what my body is going through and how much I need to thank it when this is done. In addition to the neurological issues, my vison has been impacted by the slow departure of my eyelashes as they are no longer protected. This results in the cornea swelling which has increased blurriness and decreased vision. So, instead of being blind with distances and at night as I was pre-cancer, I am now reliant on my glasses at all times of day regardless of near…or far….if I am interested in what I am looking at of course! The fatigue issue has worsened and I find myself wishing for the days where I have to prepare and have chemo as I have the “steroid high” that keeps me energized (and awake) for 48 hours straight as I feel “normal” again. I struggle with nausea and abdominal/bowel issues with no warning, making life difficult to plan around. I have had teeth break as a result of chemo and when going through chemo…this is a far more challenging fix. My loss of taste (for a woman who loves to cook and is a total foodie) has taken an emotional and mental toll. Each bite I can not taste is a reminder on how much I HATE what is happening to me. With each situation, as much as I tell myself I CAN do this, there is the voice… and it is NOT Jiminy, it is a new voice, a fearful one and I don’t want to give it a name, I want it to leave me…but it keeps asking, “how much more CAN I do?”. As I read forward to the new chemo meds that will be in the second phase of my chemo (May 31 is the tentative start), there are notes that the side effects are more significant….and the voice has gathered strength with this knowledge…” How much more can I handle?” Very honestly, I hope the voice comes down with a very serious case of laryngitis soon!

Emotionally, I fear what this is doing to my husband and my kids. Cancer impacts not only the person with the disease, but also those around them. Their worries, their stresses, their fears, however they have pulled away from their normal nature to share with me as they are worried about adding their fears to my own. The kids have found external resources, school counselors and friends. My husband, an amazing man, is dealing with a lot and was not really given the life skills of sharing feelings (I have been informed it is a “guy” thing). We have talk about how important it is for him to have a place where he can just let it all go if it can’t be me. He has found a few outlets and is working on others, but he is suffering and that alone kills me. Keeping him strong through this is one of my priorities as when you consider that I am worried about not being here, I look to the impact of my kids having just their dad….and my head then goes to him not being able to be there for them and well do you see how the fear train can just keep going if you let it.

I am slowly working down the path I am on, however the fear of having to start another journey soon after I conquer this one is in the back of my head. The thought of reoccurrence and where it could happen; the bones, brain, breast, ovaries, liver? Having to go through this all again. Having to put my family, my supports through this again. Right now…that is all too much to think about, to worry about…to fear.

There are so many more things in my fear bucket at the moment, these include my family (all of them, dad, siblings, extended, the people who feel like family, the whole group) , financial (this is not even an issue, but why the heck not add it to the pile!), work (not the person I was before this started and when will this become a concern), never being able to live a life without cancer in it, but the above are the big things that bring the tears at the moment I allow the fear to creep in.

Is it funny that my primary fear is not winning this battle? Not being here with my family? Not living the life I so want to LIVE? Is it even funnier that it is THIS fear that is is driving me to fight this battle with all I have? I do not, and actually WILL not let my fear impact my fight. However, I think my message today is that the fear IS STILL THERE.

So, there you have it…the path through is one where many emotions come along, and fear is a big part of the journey. Reality is, fear was the FIRST emotion on the path through, however some how it was more manageable at the start. I am aware that I need to tell myself that it is because the fight has now started and when I am tired I feel things differently, and they can make me less steady.

For me, it is acknowledging the weight of the fear and the need to manage it with each step on the path through. If I can not do this, the path will may take a direction that I can not, and do not want to go.

Personally, the fact I can write about it is an indication of how important it is to me to take control of the fear not ignore it, rather acknowledge it….and use it to power myself through to the end of this journey. I do not know what lies ahead, but I am strong enough to deal with it as I make it on the path through.