Let’s talk about the routine life as a cancer patient when you are at a standstill in your journey. Why, because when you (I) are off of a routine, it throws me off so much. Shocker! Makes me go a little crazy. Think a little too much in that head of mine – what is this cancer doing inside my body as I am trying to get this liver thing squared away. It is always the question in the back on my mind. Every little ache/pain/soreness/twitch I am hoping something isn’t going wrong. It is so hard not to think this all the time. But, we know our bodies the best (try too when it changes so much) and I am starting to get a pretty good understanding when something is alright and it will pass by verses something is not okay. Still working on this because it can be so different each round – each regiment you go through can hit you differently. Anxiety is so REAL. This has been hard for me, something I never really dealt with in my life. For me, I like somewhat of a routine to have somewhat of a schedule with freedom to be spontaneous – some control, especially when my world isn’t like how it was before I got diagnosed with cancer. I honestly just want a life without cancer – in my case, I am working on learning to enjoy living life with cancer. It is hard and I am finding that for myself!
When you are going through the motions of survival ship, I’ve been trying to develop tools that help me cope throughout the way. This shit is tough! Everyone’s journey is different. Some can be put in remission, some may never hear those words, some the cancer could metastasize. There are so many different avenues in this cancer world. Regardless, find the things that really make you happy and get you out of that funk and that head of yours. I am still learning what these tools are for me (especially while I am tapering off the prednisone) and I still have a lot more tools to learn and that is okay! I am a work in progress and guess what, cancer really changes a person. I know I have changed especially the last handful of months. Counseling has become one of those tools for me. Writing my blog – even with a long pause. Reading has become one – books that keep me entertained and give me a good laugh. Getting out of the house is huge for me – even if it is just for an hour or so. Take a Uber somewhere or asking one of your cheerleaders if you are in a situation where you cannot drive. Like me… 👍🏻 Just get out!!! The tools that I have been searching for are also ones I just want to feel like I do not have ‘cancer’. This is not easy. It fucking sucks. So right now, I am just slowly finding my tools that work for me and owning it. Asking for help and reaching out has been something I am learning lot about these last few months. It is hard for me to ask for help when I know I could have done these things so easy before cancer, but now with cancer – sometimes it feels like a HUGE chore and can be so difficult and frustrating sometimes. I am learning to dealing with it day by bay!
BUT, the routine life even though chemo is involved, is nice to be back on some kind of a schedule instead of sitting and waiting and sitting and waiting to get off this prednisone in order to have my SURGERY! So much was and still is going through my mind as I’ve been waiting for this liver complication to get figure out. I want to kill this stage 4 cancer! I want to do all I can to prolong my life in the way I want to!
This 2nd round back on chemo when it comes to the side effects weren’t too bad. Neuropathy is there – uncomfortable, but not as bad. I am feeling it more in my feet/toes than in my hands/fingertips. The chemo dry mouth/scratch voice isn’t the best. THE RUNNY NOSE isn’t very fun either. It just runs. And the mucus back-up, which can cause my stomach to not feel so well. Stomach held up this round and the appetite is doing well for the most part. Still not HUGE, but it’s there. Nothing is really sounding good. Hot flashes are kicking in. And…the hair is thinning. When my hair was really thinning the last time, I really had no problem shaving it off. It was fun; that is how I looked at it because honestly, I would have never done that in my life. I am pretty sure! This time, it was sad taking a shower and seeing hair around my fingers again. It’s been awhile. But, it is just hair and lucky for me, I have a lot of it! And cute hair accessories! Plus, I am just on chemo to keep things at bay until I am off the prednisone. It shouldn’t be too much longer, but things can always CHANGE…
Liver update! I like to happily announce that my liver enzymes are officially in a really good NORMAL range and you all – THIS FEELS SO GREAT! Long journey. In December, my liver enzymes were over 1500 and normal is like 17, 20, 5 – Nope, not me. This has been a long process and road to just get this unusual side effect taken care of, but it is and it makes me feel so good! Seeing that light at the end of the tunnel again! I lost it for minute…for awhile. Maintaining that weight! And most of all, tapering off this prednisone has somewhat began. Now, I say it like this because it’s still going slow. Your body has to react correctly or else. My body rejected the taper process last time and I needed to go back up in dose. IT WILL NOT DO IT AGAIN! Update on the next post with how that is going.
Side note: The book I am reading is AMAZING! For those who are battling cancer yourself, please read this. You will get a good laugh, helpful tips, some great entertainment/insight, and so much to relate too! I will probably relate to some of the things mentioned in my blog and how it relates to me. Along with the podcast that I am really enjoying…You, Me & The Big C!
The book: F*** You Cancer – How to face the big C, live your life and still be yourself
Written by: Deborah James
Currently, I just had round twenty-seven this past Friday (May 10th). I will be posting an update on how that is going soon with an update about the LIVER. I may have another chemo schedule – still waiting to hear back. Another scan will be schedule at some point within the next month or so as well. And hopefully, a little pause from being off of prednisone and chemo before the be big day, which is still unknown! 🙂